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Let's Get Real about Depression in the LGBTQIA+ Community

Listen to The Mighty Podcast episode, “Let’s Get Real about Depression in the LGBTQIA+ Community” We’ve also provided a transcript below. To talk about the episode or share topic ideas, join the Podcast Peeps community on The Mighty. In this episode, Mighty Host Ashley Kristoff sits down with LGBTQ+ advocates, Devin-Norelle and Ren Fernandez-Kim, to discuss their personal mental health journeys, the importance of normalizing the conversation about depression in the LGBTQ+ community and why they’re sharing their stories in a new campaign developed by and for the LGBTQ+ community, Depression Looks Like Me. If you prefer to listen to this episode on Apple Podcasts, you can do so here. Podcast Transcript Link: https://bit.ly/DLLMTranscript Check out DepressionLooksLikeMe.com for more information and resources: https://bit.ly/3MiPYpu To learn more about Ren Fernandez-Kim and Devin-Norelle see below: Ren: https://bit.ly/3M8yZX6 Devin-Norelle: https://bit.ly/3suxhaI 

12 Simple, Easy Health Tips That Are Actually Helpful

Have you ever tried to improve your health by following a complicated set of instructions, only to end up frustrated and unsuccessful? Are you tired of getting well-meaning but unsolicited health tips from friends and family who don’t understand your chronic illness and think yoga and supplements will fix everything? If so, you’re not alone. Many people with a chronic illness or mental health condition have had these experiences. That’s why we asked our Mighty community members, who all live with health conditions themselves, to recommend some simple health tips that are actually helpful, without being too restrictive or difficult. We hope they’ll help you too. Responses have been lightly edited for length and clarity. “It’s OK to completely unplug and rest now — the thing can be done later. Rest now, do later. Give yourself permission to take a break. And really give yourself permission. This shift in mindset has made pacing my activities so much better.” — @trampolinistwithas “I’m chronically cold. Like my internal thermostat just doesn’t work. I got a tip from my doctor about how to reset it that seems to help. Take a hot shower (she said bath, but I’m unable). As hot as you can stand for as long as there is hot water. Then towel off and dress really warmly in multiple layers. Stay that way as long as you can. The next day and for several days after, I’m not so cold.” — @elm6 “Using a combination of Vick’s Salve and Aspercreme for neuropathy in my feet.” — @tommit “Order precut vegetables and fruit with your usual groceries. It makes healthy food easier to access when you are tired or achy. I use a grocery delivery service as well.” — @shellylcooke “I absolutely don’t know what I’d do without my weighted blanket. I know they can be pricey, but to me, it was so worth it. It took a tiny bit of getting used to but now I don’t think I could go to sleep without it. That, my tattoo and my self-soothe kit are amazing when I’m having a bad mental health day.” — @stevsonmeggie “To give myself permission to rest and nap if necessary. I often push too hard to keep going and keep doing — but sometimes the laundry and dishes can wait and it is OK to just take time to rest.” — @susybarker “My mom found a cookbook written by someone who has very similar health issues to me, “Fix It With Food” by Michael Symon. It cuts out problematic foods for 10 days, and slowly adds them back in so you can find out what you’re sensitive to. It’s something I’ve wanted to try, but had no idea how. It’s only been a couple of weeks, and it’s already super obvious which foods are OK and which are not!” — @sunflower01 “I use a humidifier every night. It helps with a lot, good for skin and digestion.” — @teathyme “It started off as a ‘goal’ with my therapist to journal three times a week in the mornings, but I’m enjoying it more and more. Instead of just doing it in the mornings, I do it just whenever I’m feeling anxious or having repeated thoughts that won’t leave me alone, or when I need to get something off my mind. It really helps to get it all out of my head and onto paper. I try to make it more fun, so I even bought a pretty journal and some nice pens to use. It’s good therapy.” — @monana83 “Checking in with myself about the speed I am going about tasks helps. Sometimes going super slow feels very meditative — even emptying the dishwasher. It still gets done and I don’t get stressed.” — @katefm “Deciding to reduce or completely eliminate contact with people who are toxic in their reactions to my chronic illnesses, regardless of the pressures society places on us to honor those relationships if they are with family members. We all have the power to protect our peace. Cutting off exposure to these people stops my feeling like a living problem all the time and enables me to see myself as a worthy person in spite of my chronic illnesses.” — @isallthatineed “Breathe, just breathe. Take a moment to breathe and calm yourself. In any situation, this works for me.” — @charlymcleod For more easy health and self-care tips, check out these articles: 25 Things to Put in Your Self-Care Kit 15 Activities to Keep You Entertained When Chronic Illness Has You Stuck in Bed How to Get Started With Mindfulness Practice as Self-Care

The Mighty Podcast: I Have Bipolar Disorder, Now What?

Listen to The Mighty Podcast episode, “I Have Bipolar Disorder, Now What?” A transcript is provided below. In honor of World Bipolar Day, this episode tackles the lived experience of bipolar disorder. Mighty host Ashley Kristoff is joined by Rudy Caseres, a live-streamer, mental health public speaker, and storytelling event producer, Gabe Howard, a professional speaker, podcast host and author, and Sarah Jickling, a musician, podcaster, aerial artist and mental health advocate, for a discussion on the details that are important to know whether you have the diagnosis or know someone with the disorder. They’ll talk about their different paths to a bipolar diagnosis, the good and bad side of hospitalizations, and their suggestions for ways to create and build support before a moment of crisis.   If you’d prefer to listen to this episode on Apple Podcasts, you can do so here.   Find out more about this episode’s guests: GabeHoward.com SarahsGoodBadLuck.com  RudyCaseres.com Connect on The Mighty: Join Podcast Peeps Download The Mighty App Transcription: Ashley Kristoff Welcome to The Mighty Podcast where we infuse the health space with positivity, humor, and vulnerability. The Mighty is a safe and supportive community here to help you find the people and information you need to navigate your health journey. We’re so excited to spend some time together today. Now let’s get into what the health we are talking about. As always, I’m Ashley, your Mighty host and today I’m joined by three incredible people to dive in today’s topic: bipolar disorder. So we have Rudy Caseres, Sarah Jickling and Gabe Howard here today. So Rudy, why don’t I swing it to you first, give a little bit of background for our audience. Rudy Caseres Hello, hello, my name is Rudy Caseres. I’m @rudy on The Mighty. I’ve been collaborating with The Mighty since about 2017 when I did their ‘What It’s Like to Be Manic‘ video and I’ve been doing live streams ever since then. I was doing every month for a while. I’ve always been grateful for the opportunities that The Mighty has provided me. I was one of their Mental Health Heroes of 2017. And I also recently launched a YouTube channel called ‘Bipolar Untangled’ where I deep dive into all things bipolar and learn just as much as the viewer does. Sarah Jickling Yeah, so my name’s Sarah Jickling. Sometimes I go by ‘Sarah Jickling and Her Good Bad Luck.’ I am a musician and a mental health advocate. And I live with bipolar disorder type two, and like anxiety disorder and OCD and borderline and you know, all those things, too. I’ve collected the alphabet. I also have a podcast actually called ‘Keep it Hush Hush’ about bipolar disorder and stigma. And most of my albums, actually all of my albums, are about mental illness. So in fact, before COVID, I used to tour around to high schools in my area and talk about psychosis and tell my story and sing my songs. Yeah, it’s a big part of my life. Ashley Kristoff Thank you, Sarah, and Gabe, round us out. Gabe Howard Hello everyone my name is Gabe Howard and I live with bipolar disorder. I’ve noticed a theme it’s like that’s why we’re all here. That’s my poor attempt at humor. In my head everybody is laughing. I am the author of ‘Mental Illness is an Asshole and Other Observations.’ I also host a couple of podcasts, one of them for over five years now, ‘Inside Mental Health.’ It’s a great show where I make experts explain high-level topics in a way that my dad can understand. I figure if my dad can understand it, everybody can. And I’m very excited because ‘A Bipolar, a Schizophrenic, and a Podcast’ with my co-host Michelle Hammer is coming back. So I don’t know when this is going to air but it might be out already. It might be coming. You’ll just have to go to ThisEmotionalLife.org/bsp and check out the status on that. But it’s a super cool, 10-episode run. I highly recommend listening because you know, hey, it’s a good podcast. Ashley Kristoff I love it. Well, thank you all and thank you all for being here. Before we get into the meat of our conversation today, I just have a fun little icebreaker to get us started. So I will leave it up to your imagination as to why you’re in the scenario, so that’s on you. If you had to lose one of your five senses —so vision, hearing, touch, smell or taste — which one would you pick to lose and why? Gabe Howard I feel like this is the Kobayashi Maru, like in Star Trek, where I’m just gonna’ hack the system so that I can keep them all and win. No? Nobody envisions me as Captain Kirk? Ashley Kristoff We’re in a situation where gotta pick you just got to do it. You just got to say goodbye to one. Gabe Howard I’m gonna go with smell. I think that’s the one that I use the least. That’s, I mean I know I use it for eating, right? So that’s, yeah, I’m still gonna have to go smell. Ashley Kristoff I support this. That’s my choice as well. Rudy Caseres I was gonna say smell but I’ll go with taste because I want to be one of those people who can like, like smell colors and hear french fries. Sarah Jickling I was also gonna go with smell, you know, I really don’t use it that often and especially in terms of art, which would be my most important thing. But yeah, taste would actually be OK too because honestly, sometimes you just wish that you could just like take a little powder and not have to deal with like making food that tastes good. So it’d be a big load off my plate, literally and figuratively, to just be able to only eat like, Soylent or whatever. So yeah, maybe taste would be good to get rid of. Ashley Kristoff That definitely would make it very convenient if like you didn’t have to taste your food. I went smell because I feel like smell’s the one where it’s the worst. Like, if it’s bad, it’s the worst of them for me. If something smells bad, it’s worse than if something’s like too loud or something has a weird taste, because that can go away real quick. But smell like really lingers in there. And it just, nope. Rudy Caseres That’s why you see people pinch their nose when they have to eat something really bad. Ashley Kristoff Very true. Well, I’m glad no one picked hearing. So we can continue this podcast and actually talk to each other. So let us jump into the meat of our conversation and just because The Mighty does serve a huge community, I do want to give a little bit of context as to what bipolar disorder is, in case people aren’t super familiar with it. So I would say if you picked up a random person on the street, and you ask them what it was, they would probably just say mood swings, and that’s where it would end. Obviously bipolar disorder does have mood swings, emotional highs and lows, but it is a little bit different than a mood swing somebody who doesn’t have bipolar disorder may experience. So with that, you may experience mania, which symptoms of that include like impulsivity or risky behavior. It’s more of that emotional high, where you have increased energy, you may feel euphoric, you may talk a little more quickly, feel invincible, kind of top of the world type feeling. You also have hypomania, which is similar, but just a slightly lesser form, it’s a little bit decreased level of mania. We also have depression, which most people are very familiar with that one, but more lethargic, increased sleep, potentially suicidality, losing interest in activities. And then the final piece here isn’t super a symptom, but it’s the mixed mood, it’s mixing a little bit of each, kind of experiencing that at the same time. And then the last piece here is you may have heard terms like, I know Sarah said bipolar type two when she intro’d herself. So, there’s type one, type two, cyclothymia, there’s not otherwise specified, really, it has to do with how you experience those symptoms, which ones impact you more and in which ways. That being said, so many, so many backgrounds feel free, if I missed anything to add that in. But the first thing I really wanted to talk about is the diagnosis, journey and symptoms. You know every time you look at bipolar disorder, it says it’s one of the harder mental illnesses to diagnose. So I want to kind of just talk through that experience for anyone who is maybe on a similar journey, or is, you know, at that point in which they’re not quite sure.and that might be something that their mental health team is considering. So if anyone wants to kick it off? Sarah Jickling Oh, yeah, for sure. My diagnosis journey was, all I can do sigh, oh it was hard. And there’s a lot of different factors that go into that. When I first started experiencing these different states, I didn’t know anything about bipolar disorder. Eventually, went to my family doctor, she said, “Jave you ever heard of bipolar disorder?” and I was like, “Yes?” and then just sent me on my way, put me on a waitlist for a psychiatrist—I live in Canada. So put me on a waitlist for a psychiatrist, but didn’t really tell me anything else. So I came home being like, “Oh, so I got the diagnosis of crazy. Great.” Basically rejected it, and never ever went back to that doctor. And then for the next, I don’t know, five years, I would run away from anyone who suggested bipolar disorder as the problem. And I really went into more alternative medicine places where people would tell me, “Oh, there’s nothing wrong with you, you just need to change your diet.” or stuff like that. And every time something did go wrong, say I was in depression, I would be put on a waitlist for a psychiatrist. So I would go into hypomania and I would cancel the appointments. Because it’d be like, “Oh, I don’t even remember feeling depressed. So like, there’s nothing wrong with me.” and I’ll cancel the appointment. And this happened so many times, I basically had to skip the waitlist by just going to the emergency room and saying, I’m not leaving until I see a psychiatrist, which, of course, I had to get to rock bottom before I would do that. And that’s when I had this psychiatrist, you know, she talked to me for an hour and then said, maybe on our second visit, “Have you ever heard of bipolar disorder?” and I was like, “Yes.” Just at this point, I accept it. OK, fine. I accept this diagnosis. And by this time, I’d received more information. I was big fan of Maria Bamford and she was talking about bipolar disorder. So it felt like it just kept coming up all the time, even though I tried to escape it. By the time she finally said, “OK, maybe bipolar disorder is where we should look.” I already spent like five or six years just like running from that diagnosis. So I finally accepted it and said, “OK, yeah, That’s what I have. Now what can we do once I’ve accepted this?” Ashley Kristoff Yeah, I think that’s so good too because we talked in a different episode that was around chronic illness about how acceptance is such an important part of whatever journey you’re on because you can’t get better unless you’ve accepted that or not even get better but you can’t manage your symptoms if that’s the case, if you’re not accepting that you are experiencing some of them. So Rudy, Gabe who wants to jump in? Rudy Caseres So for me, I’ve always dealt with mental health issues of some sort, whether it be anxiety and depression. I’ve dealt with catatonic episodes as well, most prominently when I was in the army, which led to my discharge from the army. Thankfully, honorable but it was a very traumatic time in my life, because that was my last hope to make something of myself. And when that floundered, I was very suicidal. I was very, just hopeless. I did not know what to do with my life. And I tried going back into theater, I tried going back into school, nothing, it didn’t seem to work. I was dropping out of classes, dropping out of plays. I had a couple of hospitalizations, involuntary hospitalizations. It wasn’t really until I got involved with this club called Active Minds on my campus, which is a national organization where they have this is just a clubs on campus where they talk about mental health resources, we’ll go to classrooms, share our stories, just try to normalize the conversation, the mental health on college campuses. And I was their president, and I’d never been leader of anything before. I actually thought I was horrible at the job and my therapist kept encouraging me despite my wishes. And somewhere along that path, I developed my first manic episode. And I didn’t know what was going on at first, because I was pretty pretty sure like I just had the depression/anxiety with some catatonic features. This heighten like sense that I can do anything and it’s weird, because with the depression, it felt like I can do nothing that I was this loser. And the mania was just, it overcame me. And it was like no, that the pressure is gone. I started hearing more about mania and I thought like, that kind of sounds like what I’m experiencing, but the way they’re explaining this, it’s bad. They’re saying this in a way to box people in. That you’re manic, which means you’re sick and therefore, you need to be controlled, you need to be taken down a peg, knocked down to your proper level, which is depression, thinking low myself. And so I railed against that at all costs. But eventually, all that negativity coming from outside, it cracked me and I sank into a depression again, it was like the bottom completely fell out and I fell underneath. And it’s weird because I try to explain bipolar as, you’re trying to work between the poles– even though there’s so much in between. I actually don’t like just bipolar, because there’s a lot of middle ground. But it’s,you go from having the mania to where you feel like you can do anything, that you are no longer depressed, that you defeated depression and then you have the crash. The crash will come. And then you go back to feeling like you can’t do anything. And then it’s like the same voice is in your head. It just flips on you whether you like it or not. And you seem to have very little control despite how hard we try as Bipolars’ to try to harness that magic in a bottle. It is so incredibly difficult. Since that crash, I fully embraced bipolar and I’ve had a few manic episodes since then, but like not really anything serious since like 2017. I get to experience the joy of depression 99% of my life, and crippling anxiety and catatonic episodes, but I still fully identify as bipolar. I embrace it, I don’t run away from it. And I love, I love talking about it. That doesn’t mean it’s a walk in the park all the time. It sucks, but I try to make the most of it. I try to live my life as someone who is bipolar, and try to educate others try to explain it in a way where people are not too scared of bipolar. Ashley Kristoff Absolutely and, you know, being bipolar isn’t inherently bad. Having a mental illness isn’t inherently bad. So anything that can be done to break stigma behind it, but really, yeah, bring it into that mainstream of this is really actually what it looks like not how it’s how it’s been described is being such a valuable thing to put out into the world. Definitely. I’m very thankful for all of your advocacy over the years that I’ve known all of you. And then Gabe want you round us out with your story. Gabe Howard I was diagnosed after being committed to a psychiatric hospital. And before then, everything I knew about mental illness was well wrong. And based on misinformation, and I would describe it now as very stigmatizing, like I was now, the person who I run around educating. I believe what my family believes and my family believed what we saw on TV and what we heard from our friends and colleagues, etc. We didn’t really talk about emotions, there was sort of this, what we now call ‘toxic masculinity’ kind of walking around where we had to be tough and where we buried our feelings. We just believed that mental illness was something that happened to bad families. And it was something that happened to other people, and that it was very much a moral value. And I explain all of that, because I do have a good family, I really, really do. The symptoms of bipolar disorder, as Sarah and Rudy have described, can look like a lot of other things, especially in teenagers sleeping 15 hours a day, and staying up all night. That doesn’t sound like a mental illness, that sounds like a teenager that needs help with time management and prioritization. And not wanting to go to school because you’re depressed also looks like just not wanting to go to school. So my parents tried to punish the symptoms out of me. And all of this ends up with Gabe Howard, 25 years old. And coming to the conclusion that I’m just an asshole. Luckily, I did run into somebody who recognized that, hey, there’s something else going on here. She noticed the suicidality, she noticed the suicidal thoughts, and she got me to an emergency room, where as I said, I was committed and then the crash course of bipolar disorder began. There’s not a lot of silver lining in being diagnosed for the very first time with a mental illness at 25, but the ones small silver lining is there’s just an incredible amount of data that they can look at. So I was very fortunate, and I got the correct diagnosis right out of the gate. You know, I didn’t start with depression and then add on mania, or there was just so much information because I had been undiagnosed for so long. Of course, the negative is, I had done so much damage. So much damage to myself, to my relationships, to the people around me, I’d hurt so many people. Even as I described how much damage I did, it could have been so much worse. I mean, I’m still alive, I’m in a hospital, and I have health insurance. So I was even in a good place in the very, very, very bad place that I was in. And that’s that’s really like the shortened TikTok version of my diagnosis story. Ashley Kristoff Yeah, I think that’s really interesting, too, because it’s much, it’s a much different perspective, to end up with that same diagnosis, just because it took still that long time. But that you got that diagnosis immediately, which I feel like doesn’t happen too often. Something that I want to share is I was actually diagnosed with bipolar two months ago so it’s very new to me talking about it. And I’m having a lot of like, we’re at the point where I’m testing out medications right now. And the symptoms that I’m working through to talk coherently right now is fun. That being said, I was misdiagnosed over the years, which is why I didn’t know about it until this year. And it was really, because things got really bad for me. I had moved to the East Coast, I had changed a bunch of things in my life, the suicidal thoughts were increasing to the point where I didn’t feel like I could continue living like that, which is what forced me to then go and talk to people about it, because we had been treating like depression/anxiety symptoms for a handful of years but I wasn’t having any kind of success with managing those symptoms. I hid that very well, I think, but I wasn’t having success with it. It made it very clear that there was something else going on and the depression treatment that I was working on wasn’t working for me. And in fact, it was actually getting worse because of some of the medications I was trying. So that’s basically how we ended up at the diagnosis is my my psychiatrist looked at all these things, and then also knowing that, I feel very fortunate in the fact that I got diagnosed with ADHD first because they tend to be co-morbid potentially conditions. So I think that helped that process between the ADHD and the bipolar diagnosis go a little bit quicker than I think it would have otherwise, just because I really have those depressive symptoms really big. And I would say I definitely experienced hypomania, but it just kind of looks like a good day for me. So it we didn’t we didn’t think anything of it. I know Rudy, you mentioned you got diagnosed with schizophrenia. Did anyone else have a misdiagnosis at the start? Sarah Jickling First I received depression and anxiety as a diagnosis, then bipolar disorder. I rejected that. Then I received borderline as a diagnosis. I received panic disorder. I received then bipolar disorder again and then I was like, ” No” and I got so many different diagnoses. Like having literally two professionals argue with each other about what’s going on, that was very confusing. I had many situations where I would have the psychiatrists tell me one thing, and like a counselor told me something else, especially certain counselors had different beliefs about what bipolar is. And like, it’s so strange, it’s so strange that people can say, “I don’t believe in bipolar disorder.” Like this is not Santa Claus, lwhat are you saying? For people who don’t know, borderline personality disorder, it addresses those kind of like intense mood changes, like from hour-to-hour and the inability to regulate your emotions, which, at one point, I had a psychologist say, “I can diagnose you with by with borderline if you’d like.” He’s like, “I don’t think you fit all the things but if it’s going to help you get into certain programs, I can give you the diagnosis.” I just take the things that I found helpful. I think that bipolar disorder,type two, when that was finally explained to me everything, click, click, click yes. This makes sense, this makes so much sense. And that’s what happened with ADHD this year, as well. It was finally explained to me properly, I was like, “Oh, yes, all those things. I have all the things, I do all those things.” So if if you just start talking about the symptoms of one to a doctor, and then you’ve never seen that doctor again, as you see another doctor and start talking about different symptoms, you will get a bunch of different diagnoses. And I just find take what really fits for you. And ideally see the same doctor over and over again, if you can, because then they will get a bigger picture. Ashley Kristoff Yeah, I have to imagine you’re already dealing with turbulent emotions getting a bunch of different information of like, I don’t, this isn’t helping me either. I don’t know what to do here. There’s just too many things going on. Yeah, and then definitely too I think the, we talked about acceptance, but I think that internalized stigma is is very present just because like I feel like we get bombarded out, like outside of the mental health world where I feel like we can talk about it a little more calmly and holistically. I feel like outside of that world, it’s very hard to talk about it in that way. And so the you almost bring that stigma into hearing this diagnosis, because that’s how the outside world seems to view it is is that very stigmatized piece. Rudy in your diagnosis journey you mentioned catatonic episodes. Can you kind of describe what those are for people who may not be familiar with that term? Rudy Caseres Yeah, the the quick and fast way is, oftentimes people have a fight or flight response in regards to danger. When I was in the army, I couldn’t just flee the army and be AWOL that was just created all kinds of other problems. And I was tired of fighting, I could not fight anymore. I physically mentally just had nothing left in the tank. So I froze, couldn’t fight, couldn’t flight, I froze. The third lesser known F. And it’s not a fun experience, because I could not move my body. I could not talk. I couldn’t even like swallow because I had drool coming out of me. And it was in the dining facility during dinner time. So people were looking at me laughing, making jokes. I had to get picked up out of that my chair and then put onto a stretcher, and then taken to an emergency room where I eventually came to. Some people, they can be catatonic for a very short period of time, some people, it can be a month or so and where they like have to be like medically fed or find ways to get them out of that because they won’t eat or sleep or do anything and then they can die from it. So thankfully, I’ve never had it that extreme. It’s definitely happened at times where I just, I can’t, I don’t know what else to do. Like I can’t even explain what’s going on in my head and so I just freeze. And thankfully, I’m around people now who understand. I’ve been around people in the past where they had no clue what was going on and their only solution was to call 911 and then I had to be taken onto a stretcher again, taken to a psych ward, which is always been a bad experience for me, I would never want to do it again. So thankfully, I’m at a place where even if I am catatonic, and it has happened in the past couple years, I’m not worried that I’m going to be put into an involuntary situation anymore. Ashley Kristoff Definitely. And I know you’re very passionate about talking about involuntary hospitalizations as well. So I would love to just kind of jump into those different experiences, right, because I know, Gabe, you had said that you went to a psychiatric hospital, but those were under much different circumstances than you know, other things that Rudy has experienced. So I’d love to just jump into that topic a little bit. Gabe Howard Inpatient hospitalization, it’s horrible. I don’t think there’s a, it’s traumatizing. Let’s use a word that our, you know, mental health advocacy people love, it is traumatizing. And just because you have a good outcome or something like that, that doesn’t make it not traumatizing. And the example that I always use is emergency surgery, right? You get in a car accident, and they lifeflight you somewhere and you’re like, “What’s going on?” And I’m like, “Sir, we don’t have time to explain it,” they knock you out and then they save your life. And everybody’s like, “Oh my god, you got in this horrible car accident, we had to perform emergency surgery, and because of that, you didn’t bleed out on the pavement,” and you’re like, “I’m terrified, and I’m scared.” And then they look at you and say, “But it’s for your own good.” And nobody would ever do that. They be like this horrible traumatic thing happen to you and I understand why you’re scared, and you don’t know what’s going on. And they have to explain it to you. I can already see my mom rubbing my head. And everybody loves you. And just everybody’s giving you, you know, sympathy and casseroles. And yet, for some reason, if you need that same emergency assistance inmental health, it’s like, “Well, it’s for your own good. Well, we’re supposed to do?” There’s no rubbing of the head, there’s no casserole, there’s no explanation, there’s no trying to reduce the trauma. There’s just ‘it’s for your own good.’ And it leaves me in a very, very difficult position as an advocate. Did being committed to a psychiatric hospital save Gabe Howard’s life? 100%. I’d be dead if it wasn’t for it, I am positive of this. Could they have done so much more when I got out to make me understand what happened, why I was locked in, why they were doing these things? I went years thinking that I was locked in this room because society was afraid of me and hated me until somebody finally explained, “Look, you were suicidal, we had to keep sharp objects away from you and that’s why you were locked in. It’s so we could control the environment and make sure that you couldn’t get a hold of anything that you could use to hurt yourself. And of course, you were in there because you were trying to hurt yourself.” Well, that’s a very different feeling. Being told that, that they’re trying to keep instruments away from you that you may use to hurt yourself has a very different vibe from everybody hates you so we’ve locked you in this room and thrown away the key. Why did I have to wait three years, four years, five years, and become a top level mental health advocate to learn that? I mean, really, why? It’s not fair. You shouldn’t have to learn that by starting a blog and starting a podcast and advocating eight hours a day and working with Rudy and Sarah and Ashley and all the people that I work with before somebody finally says, “Hey, Gabe, did you think about it from this perspective?” Hmm, no, no, I didn’t. It’s not fair. It’s just the phrase, ‘it’s for your own good’ should be stricken from the record. I don’t give a rat’s ass if it’s for my own good, it hurt me. And I am in pain. And I deserve care for that. It really is something that we don’t spend a lot of time on. We just kind of pat people on the head and tell them that they’re OK. But again, I do struggle because it did in fact, save my life. I just wish I could have gotten better, or any, aftercare. Ashley Kristoff Absolutely. And I think it’s also too, don’t remember if I heard this by recording another episode or something else, because memory is great. They’re trying to give you the care that’s making them the most comfortable, not the care that’s like compassionate, and is actually the most helpful. So that resonated with what you were saying. Sarah Jickling Just something Gabe said really resonated with me as well. Every time I either went to the hospital voluntarily or was taken there by police officers. And I remember, first time that that happened, I ran from them, I was screaming I was knocking on my sister’s door because she lived close to me being like, “Don’t let them take me, don’t let them take me. I’m so scared.” And the more you struggle, the more they make you feel like a criminal like you are under arrest. And now I’m in the emergency room surrounded by lots and lots of different things that are happening to lots of different people. Having an emergency nurse who is, I’m sure has seen horrible things and just doesn’t have time for me so every time I, you know, scream, she calls security. And I have security guards like putting me back in the bed. I was never like, put into the psych ward and here’s why. So eventually, you know, you’re in the emergency room for eight hours. They have monitor you like for me, they’re like, “OK, you’re OK. You didn’t take enough pills to do anything horrible.” The Psych nurse comes to you and says, “OK, we’re gonna send you home because you don’t want to go to the psych ward, that is a really bad place. Yeah, I was suicidal. And I said, “Oh, no, I feel fine. I’m not going to do it again, I swear.” Like I totally planned on doing it again. I was just like, I need to get out of here and the psych nurses were saying you don’t want to go there. It’s a really bad place. So please leave. It’s amazing to me, that’s how we care for people who are having, in mental distress and potentially could, like I could have gone home and died. I totally understand why my friends kept calling the police. I think I maybe would have done the same thing. And that’s the thing with what Gabe was saying. I don’t know what else to do. It was horrible and yet, when I’m listening to teenagers when I would go on my tours to high school saying, “I’m worried about my brother. I think he’s gonna do something really bad. And I don’t know what to do.” I just have to say, like, “If you’re really worried call 911” knowing that it’s going to be traumatic, and it’s going to be awful. But at the same time, I don’t know what this teenage girl can do to stop her brother from doing something really dangerous. And the fact that that’s our only option is so awful. And I just wish that there was like a separate emergency room for mental health things. Where my friend put it really lovely, really well, where she’s like, I wish that there was like a separate emergency room that looked like Central Perk from Friends. And just like, low lighting, couches, everything’s OK. And then like having a psych ward, where people actually are, where the nurses aren’t like, “That’s the bad place. You don’t want to go to the bad place.” You know but, “Oh, no, we can take care of you, make sure that you’re safe, and it’s going to be OK.” I think that so many things need to change. I mean, I’m glad I’m not in a straight jacket in an insane asylum but that’s a very low bar. So we’ve got to do better. Ashley Kristoff Yeah, I feel like you you shouldn’t be in this situation where you have to decide a psych ward or feeling suicidal and you can’t decide which one’s worse. Like, that shouldn’t be a conversation that you need to have with yourself or with anyone. Rudy Caseres Yeah, one of one of the more annoying things about being a psych ward patient and also manic is that you’re often treated like you’re “crazy” and no one, if you’re manic, you don’t think that you’re crazy. You think everyone else is. It can be very counterproductive if you’re a mental health professional, and someone tells you that they’re Superman, or they have magic powers, and be like, “OK, whatever, get back over there. Take your medicine and everything.” If you’ve ever talked to someone who works a crisis line, especially a peer-support line, you’re told to not completely invalidate someone’s delusions, no matter if you think they are completely delusional, completely wrong, completely incorrect. You as someone who’s trying to provide support, you can’t just say like, “You don’t really believe that, right?” That is, that is not going to work and yet that happens so many times in psych wards. I’ve seen it myself, I’ve actually have gone into psych wards to do presentations, to share my own story which is always an interesting experience. But I see with my own eyes of how little respect people who are experiencing mania and psychosis are given in psych wards. And that’s not going to help if your end goal is to get that person to a better place where they’re no longer a danger to themselves or others, completely validating their experience is not the way to go. Gabe Howard Along those same lines people always say to me, because Rudy and I have the same job just in different states. And they’re like, “Oh, so you should just agree with people? Somebody tells you that there’s a dragon following them around, to not invalidate them? You should just agree that you to see a dragon?” And I always laugh a little because I’m like, “No, why are there only two options, agree with the person or tell them they’re wrong?” This is what people believe. There’s only two options. Nobody feels this way when dealing with significant others or their friends or children, etc. When somebody says, “Hey, I see a dragon.” You don’t have to agree with them. Just say, “How’s that making you feel? Are you worried about the dragon?” None of these things say that you agree with them. You’re asking them questions and you’re following up and you’re engaging. And look, telling somebody who sees a dragon that there’s no dragon is stupid. And here’s why–they see the dragon. You tell them that there is no dragon. They do not believe you. The conversation is over. They think you’re a liar because who are they going to believe, you, or their lying eyes? And that, “Well there’s no dragons.” Yeah, stop it, you’re supposed to be the person who is of sound mind. It’s just mind numbing. It’s this mind numbing circular logic that the people in charge of helping us do not do what will actually help us and instead decide to plant their flag on logic. These are the things that we need to isolate and change. I do believe that the people providing us care are good people, I’m not trying to throw providers under the bus. I understand that they have many, many, many issues as well. But their issues cannot be more important than the patient issues. They are there to serve the patients and sometimes I feel like it’s my job to reassure them that they’re doing OK. And maybe it is, but it’s also their job to make sure I am actually doing OK. And that’s a conversation that I think gets buried a lot. Now I want to dragon, like so bad. Let’s get a dragon guys. Rudy Caseres I’m nodding my head ferociously for those listening at home. Gabe Howard If we get a big enough dragon, the four of can ride it. Ashley Kristoff I literally got a dragon yesterday. I went to Build-a-Bear yesterday and they had a Toothless and I had to get it. I wasn’t planning on getting anything, we had taken my friend as a surprise. because she had talked about going, there was a Toothless. So I now have a dragon. Rudy Caseres Yeah OK. Gabe Howard I don’t believe you. Rudy Caseres Whatever you say Ashley. Gabe Howard Sure. No, right? Rudy Caseres The point is not necessarily whether a delusion or a vision or a voice is “real or not,” it is about what is it in reaction to. What is the underlying story behind this? What caused this? This doesn’t appear out of thin air and if you can steer the conversation towards that, you’ll have a lot better productive output than just going around in circles telling the person is wrong. Ashley Kristoff And too I want to note, because you said like, yeah, the doctors can be great people but it is that systemic issue versus like a personal issue. Even so there are so many professionals who are like, “I want to do differently, and I want to do more,” but they also are restricted in that way too by who they’re being employed by, by maybe the board who gives them their certifications. And that’s more frustrating, almost, because they want to give you that care, and they can’t, so they aren’t in a situation where they can actually give you the appropriate care you need. Sarah Jickling I hope that in the future our psychiatric wards are better. And I know because the best psychiatrist I had was the youngest psychiatrist I ever had and I feel like the education is changing. It is like Gabe said, small changes. You know, there’s gonna be new medication invented, discovered. A lot of this stuff was not even discussed 100 years ago. So we are really, really behind in the medical community when it comes to all this stuff with our brain and also it’s people don’t know a lot about the brain. So I just have a lot of hope for the future and when people tell me, “Oh, you know, doctors don’t want you to know this. Doctors are being paid off by these people.” I’m saying no, they’re trying their best and the people who are telling you they have the answers, those people are lying, because there are no answers and there is no good thing to do at this time. It sucks but yeah, it’s the best we’ve got right now and I just, my thing is don’t die. What can we do to make sure that you don’t die and you don’t hurt anyone else? And unfortunately, these are the things they do. Ashley Kristoff I do want to swap to that support side here is how can we support our friends, family loved ones who are bipolar, and, you know, maybe are having suicidal lows, or you know, they’re in a place where they’re either going to cause danger to themselves or others. Sarah Jickling I think the best thing to do in terms of support is to be there and just continue to say, “I’m here.” Like an even, I had one friend who just came and sat with me for an entire day. And like she didn’t even say anything and that was helpful. Making somebody food, like doing these things that we can’t do when we’re in a really bad place. That’s a really great support thing as well. And also remembering when the people are seemingly well, they still have those mental illnesses, and not being like “Wow, well you’re so lazy, because you’re not doing X, Y and Zed,” but being like, “oh my gosh, amazing! You haven’t self harmed in a while. You ate food. Good job!” Instead of basically immediately forgetting that the person has been struggling as soon as they stopped physically showing the struggle. For me, that’s the number one thing. Gabe Howard If somebody is an immediate danger to themselves or others, obviously it is now left your hands. I want to be clear, we’re not superheroes, we’re not doctors, we’re not medical practitioners. And we have to remember the safety of our loved ones and understand that sometimes the worst case scenario is upon us. The crisis is here. It’s time to call for backup, right? We want to be very present of that. We want to know that just because we mean well, or that we’re friends that we love people doesn’t mean that we have all the answers. And we want to feel empowered to call, you know, for help. One of the things that I think about is a fire drill, right? I was in school for 18 years, and I had more fire drills than I can count. Listen, the building never caught on fire, it never caught on fire. But we had all these fire drills before the building caught on fire when there was absolutely no danger. And we learned what to do. And we learned where to go. And we learned how to check in. And I feel very confident even as a 45-year-old man who hasn’t been in school for 30 years, that of that building would have caught on fire, we all would have got out. Because we practice it so much. We need to do this in mental health. It is like Sarah said, so often, we only want to talk about mental illness when there is a crisis. This is literally like figuring out how to get out of a burning building. While the building is on fire. It’s the worst time to discuss it. So normalize, having these discussions and figuring out the crisis plan when there’s no crisis. That way, when you get to that point where it’s out of your hands, you can literally do what Sarah, Rudy, Ashley want, because you’ve already discussed it. You know who to call, you know where to go you, you know what happens. Also, because of these discussions, you can really get there before, not all the time, it’s not perfect, but you know, perhaps I can get there before Sarah, Rudy, Ashley, hit crisis,. I can say, “Hey, I can see that you’re trending down, because it’s so normal that we discuss it, I can tell that look, it’s just a few days before you hit the danger zone, let’s do something now.” And Rudy’s like, “Look, I trust you, because we discuss this all the time.” Sarah’s like, “I get it.” Ashley’s like, “I get it.” And all of a sudden, you know, we’re preventing the fire because we see that there is a hazard versus, you know, just being inflamed. Look, my grandma says a pound of, what is it, an ounce of prevention is worth a pound of cure. It’s an old timey saying, but I think it tracks. Ashley Kristoff I like too that you said too is note when you can’t help because that’s very important. Don’t try to help somebody if you don’t actually have the capability to do so. Rudy Caseres I love that and I will say that too often people think that because they’re not a trained professional, that they’re not capable of providing peer-to-peer support. And I try to rail against that, that anyone is capable of offering support, because oftentimes, our minds are warped on what support looks like. It looks like that we should be telling someone what to do, we should be trying to cure them, we should try to save them. Oftentimes, we don’t give people choices. We don’t give them agency. Simple things like asking someone if they want to sit down or stand up when you talk to them or go somewhere less quiet. That can be huge. Just little things like that, that seem like they don’t make like a big deal can really, really help because you want to get to a point where you’re helping someone before they get to that point where they’re over the limit, where they’re in need of emergency support. Oftentimes, we don’t do that enough. We just wait until that person is at the cliff or on the bridge, and so much we can do. There’s so much we can do to help people out way before that. And that’s what I am a big proponent of. Ashley Kristoff Yeah, I love that. And I do want to, we did ask the community a question ahead of this episode so I would love to get like a one sentence response to this if you can. So we asked, “If you could go back in time, what advice would you give your past self when you got that initial diagnosis?” I do want to share one brief one from the community and one slightly longer one. So the first one was, “Get out of retail,” which just was great. But the other one I wanted to share was, This will change your life, but you will grow and learn to take care of yourself” and I thought that was just a very good speaking of that acceptance piece, right? Its like knowing this, you know, having a label can just be really helpful more than it can be like you need the definition. So sometimes just having that knowledge is sometimes enough to at least get you to that point in which you can take care of yourself. So does anyone have an answer of what you would tell your past self? Sarah Jickling I think I would say finding the problem means we can find the solution. So now that we’ve named the problem, now we can find a solution. We can find a way out. Gabe Howard Mine would probably be other people have been where you are and they are OK now. Rudy Caseres I would say to not run away from bipolar or any mental illness diagnosis. To embrace it in a way where it is part of you. It’s not all of you, but you’re going to find a way to make this into a positive, and you’re going to be a badass bipolar mental health advocate. Ashley Kristoff Love that. It’s a great way to end that part. So, I do you want to jump into our Self-Care Corner before we wrap things up. So I wanted to ask what kind of boring self-care do you do to either help prevent your down swings or what does the boring self-care look like that you do to either manage symptoms or kind of those episodes. Gabe Howard Sleep hygiene. I get made fun of for bringing this up so often. As go sleep, as goes Gabe’s moods. Sleep hygiene is the most boring thing ever. In a nutshell, it’s this, go to bed and get up at the same time. Only use your bed for sleep and sex. That means leave your devices, don’t watch TV, and set up a place for sleep. That way when you climb into bed, your body’s like well, there’s nothing to do here but sleep. And it just helps. And if you end up with a symptom where you do stay up all night, remember, get up at the same time. So yeah, that’s going to be a rough day but you haven’t reversed your sleep cycle for the next month. And pay attention to it. If you have trouble sleeping for too long that is a fair symptom to report to your doctor. So many people think that sleep is laziness, it’s not. Sleep is necessary. It is oxygen. And especially for somebody with bipolar disorder, going to bed at the same time getting up at the same time and creating all of these rituals around sleep has literally made my life 90x better. The 10% that it’s made worse is being mocked for just being so into sleep. Sarah Jickling I think that for me movement, I have to move. I’m a pole dancer and a pole instructor now. I do a lot of movement every day. But even if I am not going to go dance or do circus stuff, I have like this little thing that helps me go upside down. It helps me do handstands. And going upside down, if I’m if I’m freaking out, I go upside down. It just it helps so much. Or just even to do like a little dance or jumping jacks. I have to move every day. It helps so much it’s ridiculous. Rudy Caseres I listened to Gabe Howard podcasts, Sarah Jickling albums and Ashley ASMR streams. Ashley Kristoff I haven’t done one of those in a long time. Gabe Howard I’m sad that that’s the ridiculously boring thing that he does. Wasn’t that the question? What’s the mundane? Boring? Wow. Wow. Ashley Kristoff Oh yeah, that’s true! Rudy Caseres I mean, but in all seriousness though, oftentimes people, they don’t like being in their own head. And they like to shut things off or always have noise going on in the background. I like to be introspective. I, because when I’m depressed or when I’m manic, there’s something missing. in my life, especially with depression. There’s some need not being met. And I don’t always recognize that if I’m just constantly thinking about what I’m going to what I’m going to do next or like are always on my phone, or just constantly just like hyper connected, I have to just be completely offline, whether that means like going for a hike, or going for a drive through the mountains or something or by the coast and just be in my thoughts and really try to pay attention. What am I missing? Why am I depressed, there’s a reason behind it, it’s not always obvious. And when I can get the root of that, I can start working on myself. That doesn’t necessarily mean I’m no longer depressed, but I at least have a reason for it and a reason to work on something. Because when I’m working on something I can be depressed, it doesn’t really matter. But I want to have that meaning and that’s something that people don’t understand is that you can still be depressed every day and still have a meaning in life. Ashley Kristoff Absolutely. And my answer is honestly very similar to Sarah’s where I’ve found that I do need to exercise regularly, almost every day if I can, because I need to get my heart rate up every day. Because that helps with the anxious thoughts, which I find really compound my depressive symptoms a lot of the time. It’s like I get myself so worked up that a lot of the time it turns into depressive symptoms because I’ve gotten myself so worked up over something. So being able to even just clear my head with that significantly helps that other area as well. Final question I have for everyone here is what made you feel Mighty this week? I will start while you think of some answers. I had a great weekend, which I don’t, a lot of times I feel the weekends too short and I don’t get the rest and such that I need out of it, and I just had a really great weekend. And I’m just very happy about that. So that’s what made me feel Mighty this week. Rudy Caseres I’ll go first for once. I’m here right now in Delaware with my wife and her parents. And it was good timing because I was feeling very overwhelmed and missing that purpose in life. And being here, it’s been helpful to get out of that frame of mind because I can be helpful to my in-laws. I can help them get things or even I’m driving them around tonight. I can help with their dog, I can help around the house and do menial tasks, which sounds kind of boring, but for me, it it helps that I’m like being of use to people and being productive and getting out of that like sad, poor me zone. Sarah Jickling For me, this week, my podcast co-host, who also has bipolar disorder, went to a dark, dark place and I didn’t hear from her for many days. I did and she said, “You know, I haven’t left my bed. I’m not doing well.” And I convinced her to come with me to a twerking class. And we twerked. And she said, “I’ve never felt this good. I haven’t felt this good in so long. This made me feel so much better.” And I was like, yes, twerk is therapy and I got somebody else to do it with me. Ashley Kristoff It is surprising sometimes the things that can genuinely increase our mood. So I just, I love that. That is, that’s great. Gabe Howard The thing that made me feel Mighty this week is on Saturday, I watched my three-year-old granddaughter the entire day. Now if you’ve ever spent an entire day with a three year old, it is a special kind of hell. And I got bored. And I said to her, “Knock, knock” and she said, “Come in.” And I said, “No, it’s knock knock, you have to say ‘who’s there?'” And she goes, “Grandpa, I know that it’s you.” And I said, “No, no, it’s a joke.” And she goes, “Grandpa you’re not a joke.” I don’t know why, but I gotta tell you, it was awesome. I felt like a million bucks. Because of course I was smarter than a three-year-old. Ashley Kristoff Also, kids are so unfiltered so it really is a genuine compliment from a child because they will say literally anything. Gabe Howard They will and she just looked at me she’s like, “Why are you so stupid? You knocked, I said come in. This is over. Also, there’s not a door.” I really felt like she had this look on her face like if she knew the word ‘dumbass,’ she would have called me that. But her being three probably saved me on that one. But it was a nice moment. And also spending the day with her was was truly, truly a nice moment as well. Her going home made me feel very Mighty, and thankful. Ashley Kristoff All right, before we wrap things up, let’s start with you Gabe, do you have, how can people find you? If you want to share anything about your work. Gabe Howard Yeah, please head over to GabeHoward.com, you can find everything about me there. I wrote the book ‘Mental Illness is an Asshole and Other Observations” which of course is available on Amazon, because everything in the entire world is available on Amazon. But if you want me to sign it and throw in free swag, go to GabeHoward.com and order it there. Finally, I really really want to plug ‘A Bipolar, a Schizophrenic, and a Podcast.’ It was a super popular podcast that ended all the way back in 2019. And we’re bringing it back for 10 episodes so sincerely check it out. Just go to ThisEmotionalLife.org/bsp or search for ‘A Bipolar, a Schizophrenic, and a Podcast’ on your favorite podcast player and look for the the little icon-y thingy that has Gabe Howard and Michelle Hammer on it. Which of course you know what we look like. I mean, that’s just, it’d be ridiculous for you not given our extraordinarily high level of fame. So you probably want to start at the website, ThisEmotionalLife.org/bsp. Please check it out. It’s really, really cool. Ashley Kristoff Thank you, Gabe. Sarah, let’s go to you. Sarah Jickling So my music is everywhere that you can stream music, literally everywhere. So if you look up Sarah Jickling which rhymes with ‘tickling’ and ‘pickling’ but with a “J” it will be under ‘Sarah Jickling and Her Good Bad Luck’ and you can listen to my albums there. I would love that. And also I have started a podcast with my friend, it’s called ‘Keep it Hush Hush with Sarah and Jessica’ so you can also find that on all of the streaming sites and on SarahsGoodBadLuck.com And there’s another podcast called ‘Keep It Hush Hush’ that’s about BDSM, so it’s not that one. It’s the one about bipolar disorder. A shley Kristoff Thank you, Sarah! And Rudy. Rudy Caseres I own Sarah’s previous two albums and they are very good. I always love it when they come on shuffle mode when I’m listening to music and it’s like, oh, that’s Sarah’s song that’s so highly recommend it. I also have worked with Gabe quite a few times in the past, we’ve spoken at events, we’ve done podcast together, we’ve done live streams together. So great guy, go check him out. I am @rudy on The Mighty, you can read some my stuff. I wrote a piece that created quite a stir a couple years ago called ‘I’m Bipolar and Don’t Want to be Cured.’ I’m also, best place is also RudyCaseres.com. I know that’s hard to spell, but it’ll be in the show notes, don’t worry about it, we’ll take care of you. My my new YouTube channel, ‘Bipolar Untangled’ is not cool enough to have a custom URL yet, So go to Youtube.com/RudyCaseres and the there’ll be a click through link to go to my ‘Bipolar Untangled’ channel. You can also see other videos that I’ve done, including past Mighty interviews where I got to interview Maria Bamford at The Mighty offices, and some of my keynote speeches as well. I am @RudyCaseres on Twitter and Instagram. Those are probably all the greatest hits. But if you want to contact me go to RudyCaseres.com, there is the contact sheet. So if you want to collaborate or if you have an event that you’re looking for a speaker, and Gabe has already declined, by all means. Ashley Kristoff Love it, awesome! So thank you, Rudy. Thank you, Sarah. Thank you, Gabe, for being here today. And I know all of you do talk about mental health a lot but I do just want to thank you for opening up, being vulnerable, and just sharing your experiences with the community because, you know as you said about suicide talking about this, in general is what makes progress and it’s what helps people understand things better and get more competent care where we need it. Thank you for listening to The Mighty Podcast. If you want to continue this conversation, head over to TheMighty.com or download The Mighty app to become part of our community. We’d love for you to give us a rating and review on Apple Podcasts, follow us on Spotify, or, if you’re listening directly on The Mighty, give this page a heart. Join us on our next episode and Stay Mighty.

Why We Say 'Disability,' Not 'Special Needs' - The Mighty Explains

“Special needs.” It’s a phrase you’ve probably heard a million times. Special needs kids, special needs parents, special needs schools. The term is everywhere — but in recent years, the disability community has spoken out, asking people to stop saying “special needs” and calling for replacing this now-outdated language. As a media website and community that centers the voices of people with disabilities and health conditions, The Mighty phased out the use of “special needs” in edited, published articles beginning in 2017. If you’ve submitted a story to us in the last few years, you might have noticed that we changed “special needs” and other similarly-problematic language before publication. In this installment of The Mighty Explains, we discuss some of the reasons to stop saying “special needs” — and what to say instead. Reasons to Stop Saying “Special Needs” Saying “special needs” contributes to disability stigma. “Special needs” is a euphemism, a phrase created to avoid some other word or concept that is considered negative. Euphemisms aren’t always problematic; I think most of us would rather say “bathroom” than “place for peeing and pooping,” for example. But using a euphemism means you are trying to hide or downplay the unpleasant nature of something. And in the case of “special needs,” that something is disability. The term “special needs” only exists so that people don’t have to say the word “disability.” It allows non-disabled people, especially parents and educators, to avoid describing children as having a disability — because they view disability as something bad. But disability is not inherently bad. It’s a natural part of being human. One in four American adults has a disability, and everyone who lives long enough will become disabled. Some disabilities can be debilitating and life-threatening, but people who live with them should not be stigmatized. Disability is a neutral, factual word that does not need to be replaced by anything. Saying “special needs” when you mean “disability” denigrates part of a person’s identity, which can be particularly damaging for children. Many children with disabilities struggle with low self-esteem because they know their families are grieving that they are not “normal,” and their peers may avoid or even bully them. It’s hard to accept yourself when the people around you are saying through their actions and language that part of who you are is not good enough. Parents can help their children grow up to be strong adults by using accurate language and teaching them to be proud of who they are, disability and all. Parents of children whose intellectual disabilities may limit their understanding should still use respectful language, as presuming competence is essential, and other children and adults with disabilities are also affected by the words we use, not just those in our families. Disabled people and disability organizations have been outspoken in their opposition to the use of “special needs.” The #SayTheWord campaign was created by Lawrence Carter-Long, Public Affairs Manager of the National Council on Disability to encourage people to say “disabled” and acknowledge the power of disability culture and identity. It has become a popular hashtag on Twitter and helped to spread the message that disabled people don’t need to be erased with euphemisms — we need to be heard, respected, and accepted. The National Center on Disability and Journalism at Arizona State University’s Walter Cronkite School of Journalism and Mass Communication publishes a Disability Language Style Guide for journalists and media outlets, which states in part, “Avoid using these terms [special needs] when describing a person with a disability or the programs designed to serve them, with the exception of government references or formal names of organizations and programs. It is more accurate to cite the specific disability or disabilities in question. The term ‘functional needs’ is preferred when a term is required.” The term “special needs” is used to mock and bully people with disabilities. In 2019, The Mighty’s then-Parenting Editor, Ellen Stumbo, wrote about the use of “special” and “sped” (short for special ed) as an insult at her daughters’ school, in the article Is ‘Special Needs’ the New R-Word? Adults often use the word special in a sarcastic tone, too. You read it aloud in your head like that just now, didn’t you? Calling someone “special” in some contexts now suggests they are spoiled, entitled, and/or not very bright. These are, not coincidentally, stereotypes that are often applied to children and adults with disabilities. We are often viewed as spoiled and entitled for defending our rights, and incapable due to perceived or actual intellectual disabilities. A 2016 study published in the journal “Cognitive research: principles and implications” found that “persons are viewed more negatively when described as having special needs than when described as having a disability or having a certain disability, indicating that special needs is an ineffective euphemism.” This disproves the notion that saying “special needs” is somehow more polite or more positive than saying “disability.” Words related to disability frequently end up on the “euphemism treadmill.” They start out as polite or neutral medical terminology, but become pejorative over time because of how pervasive ableism is in society. Humans frequently turn words related to intelligence and physical ability into insults, as if having limitations in these areas is the worst thing that could ever be true of a person. The term “special needs” is well on its way down the euphemism treadmill, but “disability” is not. Of course, language is always evolving, and it’s possible that “disability” will be replaced by something else in the future — but for many reasons, that’s unlikely. Disability is the word used in the vast majority of laws that protect people’s rights, such as the Individuals with Disabilities Education Act and the Americans with Disabilities Act. It’s a word the community supports and defends. It’s the word we should use. People with disabilities have human needs, not special needs. This hilarious awareness campaign created for World Down Syndrome Day a few years ago shows exactly what’s wrong with saying “special needs.” People with disabilities have the same needs as everyone else — food, housing, healthcare, education, etc. The difference is not in what the person needs, it’s in how their needs can be met. This is an important distinction that affects how children are perceived. If they have “special needs,” they need things other students don’t get, and other kids, parents, and society in general may judge them negatively for getting “special treatment.” If they have a disability, the conversation can instead focus on how to help them be on an equal footing with other students. It’s also important to note that the vast majority of disability “accommodations” either make things more accessible to everyone or have no impact whatsoever on those who do not need them. For example, a building entrance with a step is inaccessible to some people, but one with a ramp is accessible to all, as people without a mobility disability can use ramps too. Using captions on TV and movies helps people who are hard-of-hearing, and those who can hear can still enjoy the dialogue. Replacing timed exams with final projects or papers assigned weeks in advance means many students with disabilities won’t need to ask for extra time, and non-disabled students can complete the same assignments. There is nothing inherently special about disability. That is not to say we shouldn’t celebrate disabled people who have accomplished great things — of course we should. But the mere fact of having a disability does not make someone “special.” Disability is extremely common, yet people with disabilities are routinely singled out as “special,” as needing “extra” things, as being an inconvenience at best and a burden at worst. If we want to create a society in which accessibility is the norm, where inclusion is built in and differences are celebrated, it starts with changing our language. And that means relegating “special needs” to the dustbin of history and embracing “disability” as the affirming word chosen by the people it represents. How The Mighty Is Handling This Change The Mighty, like the rest of society, has evolved when it comes to disability language. Many of our early contributors/writers were parents of kids with disabilities, and described their children as having “special needs.” In 2016, we began developing new editorial standards to ensure that parents and family members were writing respectfully about their loved ones with disabilities. For example, we won’t accept stories in which parents go into detail about potentially embarrassing topics such as a child’s personal hygiene or behavioral challenges — unless the child is able to understand and consent to publication. We realized these standards needed to include language as well, and so we now replace “special needs” with appropriate terminology such as “disability,” “chronic illness,” or “mental health condition” before stories are published. You may still see the term “special needs” used in older stories on our site, but when we find them, we add a note at the top about outdated language that includes a link to this page. Many of these older stories are otherwise great, and remain valuable resources, so we don’t want to remove them, but we do want people to know they contain words we don’t use anymore. You may also see “special needs” used in Thoughts. Thoughts are user-created posts that do not go through our editorial process, and therefore may contain language that is not in line with our editorial standards. We have moderators who can take action if people post abusive or extremely harmful Thoughts, but using “special needs” and other outdated terms does not put a Thought at risk for deletion. You may see “special needs” used in direct quotations, such as in a news story, or in an organization name, or as part of a legal concept, such as special needs trusts. And of course, you may see it in articles that explain why it’s problematic, such as this one. “Disabled” is not a bad word, and children with disabilities have human needs, not special needs. We’ve updated our vocabulary, and we hope you will, too. Resources Learn more about disability and respectful language by checking out these Mighty stories: Should You Say ‘Special Needs’ or ‘Disability’? Is ‘Special Needs’ the New ‘R-Word’? Disability or Special Needs?: The Language My Child With CP Wants Me to Use

The Mighty's Top 10 Most-Read Stories of 2021

It’s that time of year where people tend to be a tad bit more reflective than usual. For many, this can be a very complicated and conflicting time as we wrangle and process those we’ve loved and lost, new diagnoses and old ones that persist, and a myriad of other experiences. The Mighty is not immune to this contemplative period. That’s why we wanted to take a moment to celebrate our ten most read Mighty stories from the year 2021. These stories collectively have been read by over 600,000 people from all over the world. That’s over 600,000 people who found stories that they not only resonated with, but were able to find comfort, resources, answers, and for some a starting point in their own health journeys. We thank all of you – every Mighty reader, contributor, Super Contributor, and more for being a part of this community. Thank you for sharing your stories. Thank you for trusting us with them. Thank you for pushing “share” on social media networks. Thank you for being a core part of what makes The Mighty community so unique and special. Without further ado… The Mighty’s Top Ten Stories of 2021 1. When I’m Questioned About My Disability Parking Placard by Tammy Monaghan “I will no longer put myself in danger to appease someone else. I pray that each of you utilizes and accepts the assistance you need, whether it be a disability parking placard or a mobility device. If you don’t, the only person who is affected is the one you should care the most about — you!” How it resonated: “Thank you for sharing this! There are many people experiencing this” 2. To the Family and Friends Who Disappeared After My Child’s Autism Diagnosis by Jacquelyn B. “I read this quote and it really resonated with me. “There is a ‘get it’ factor in parenting kids with autism… Those who get it become part of your inner circle. Those who don’t are weeded out, often through no particular fault of their own.” How it resonated: “Wonderful description of the life of autism parents’ rollercoaster. Only those who have experienced it can appreciate what it is ( my personal opinion) . No one else had a clue what it is like.” 3. My Heart Goes Out to Nick Carter, His Wife and Their New Baby by B.L Acker “Reading the news stories about Nick Carter, his wife and baby brought it all back for me full force– the string of miscarriages, the surprise pregnancy, the extra stay at the hospital where you hope and pray with all your might that your baby is okay. I don’t personally know them, but I rooted for them with every fiber of my being and watched apprehensively for updates, hoping that things would turn out well for them as it had for me, because I too had been there. I could imagine what they were going through, as could many other women who have been in similar situations can I’m sure.  I was elated to see him announce that his wife and child were doing well and would be heading home.  I sympathize and empathize with all the losses they’ve endured up to this point and am so grateful that they, too, were gifted their own little surprise blessing after resigning themselves to the fact that they may never have another child. What the writer had to say about it: “I don’t personally know them, but I rooted for them hoping that things would turn out well for them because I too had been there.” 4. How Netflix’s ‘Maid’ Perfectly Illustrates What It’s Like to be a Parentified Child by Monika Sudakov “Rarely do I watch a series that renders me speechless and overwhelmed. After watching “Maid” on Netflix, I felt this lingering sense of pain that prompted me to message my therapist. I was simultaneously triggered, intrigued, angered, captivated, and validated by the show. The series, starring Margaret Qualley and Andie MacDowell as daughter and mother Alex and Paula, is poignant and depicts the very broken system we have in this country for victims of domestic violence. While that is an important discussion to be had, the focus of my own catharsis in watching the show was the painfully accurate depiction of a parentified and enmeshed mother-daughter relationship.” How it resonated: “I couldn’t relate more to how this person described how intriguing it was for them. So many emotions. Binged it all in 2 days. Could not stop. Something so similar in how I grew up…” 5. The Learning Disability You May Not Have Heard Of by Kelly M. “I have a learning disability — a few actually — including one you may have never heard of. It is recognized by most neuropsychologists and yet it is controversial because it does not exist in the DSM-5: nonverbal learning disability (NVLD/NLD). The name is often misleading to the average person. One may see the word “nonverbal” and assume it means the individual does not speak. This is often quite the contrary. Those with NVLD can be quite talkative; the reason behind the name is because NVLDers struggle with understanding nonverbal communication, a hallmark of the learning disability.” How it resonated: “As somebody with NVLD, thanks so much for writing this. I also have trouble with fine motor skills, embarrassed myself in P.E. and had trouble learning to drive and still can’t parallel park.” 6. Biden Withdraws Trump Rule That Would Require People to ‘Prove’ Their Disability by Leslie Zukor “While Biden’s move was applauded by disability advocates, they urged the president to do more. Since Biden promised to expand Social Security benefits during the 2020 presidential election cycle, progressives are prodding him to fire Trump administration holdovers, Social Security Administration Commissioner Andrew Saul and Deputy Commissioner David Black, both of whom spearheaded the Trump administration’s changes to SSDI.” How it resonated: “A sigh of relief after long difficult years????☮????” 7. When I Became ‘That Mom’ I Once Dreaded as a Special Education Teacher by Trish Jacobi “If you are reading this as a seasoned special educator, you likely are very familiar with “that mom.” You may be counting your blessings that you did not get “that mom” this year or you may be cursing your misfortune if you did. You may already be preparing for the possibility of getting “that mom” next year or still recovering from having her last year. For those of you studying special education or very new to the field who don’t know about “that mom,” this is a good time to learn.” How it resonated: “I needed this article today as I’ve had to be “that mom” all week. Thank you for your insight and encouragement.” 8. What I Want Others to Know About Life With HS by Allyson Byers “Usually when I share that I have a chronic illness, someone will ask what it is. I’m very open about my hidradenitis suppurativa (HS), but I still struggle with how to answer this question. I’ll first say it’s HS, then I’ll follow up with a joke about how it’s a mouthful. I debate how to best describe what it is that I, and so many others, live with. If I say it’s a skin disease, I’ll sometimes be met with a look of dismissal that suggests, That’s all? If I explain that it results in boils and lesions all over the body, there’s usually at least a quick look of disgust that passes over the person’s face. I just want to show them one of my flare-ups to help get my point across of just how painful it is.” How it resonated: ” Wow! Right! Now I have learned that I’m so lucky that my husband loves me and accepts me just as I am. And the flaky friend is definitely a terrible feeling.” 9. Why Anhedonia Is Such an Insidious Symptom of Depression by Fairley Lloyd “Thanks to the internet and the world generally being more connected than it was several years ago, we know more about depression and its symptoms than we did before. Growing up, I remember thinking that depression was just a general period of sadness, nothing as serious as it was, until I developed depression in high school. The feelings of self-hatred, suicidal thoughts, fatigue and loss of appetite are just a few more symptoms of depression that we’ve become more aware of.” How it resonated: “I never knew this had a name of its own. It’s my daily life lately. Even with antidepressants, therapy, etc… I still feel this way every waking moment of my life.” 10. 8 ‘Quirks’ I Realized Were Symptoms of ADHD by Mel Hebert “As someone who got diagnosed with attention deficit hyperactivity disorder (ADHD) as an adult, when that diagnosis hit so many things just made sense. Sure, I always had the typical fidgeting, restlessness and lack of focus of someone with ADHD, but I attributed it to that just being me. I was just an antsy person. But this diagnosis also explained deeper things– things I thought made me a bad person.” How it resonated: “Mel, it’s like you just described a day in my life!”  

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Living With Chronic Migraine

Listen to The Mighty Podcast episode, “Living With Chronic Migraine.” We’ve also provided a transcript below. To talk about the episode or share topic ideas, join the Podcast Peeps community on The Mighty. In this episode, The Mighty Podcast host, Ashley Kristoff, discusses Chronic Migraine with neurologist Dr. Margo Butchee, MD, MPH and “My Crazy Good Life” food blogger, entrepreneur, and Chronic Migraine patient Becca Ludlum. They talk about the challenges of living with the disease, how to find a doctor, and a treatment path that Becca took on her Chronic Migraine journey. This episode of The Mighty Podcast is sponsored by AbbVie. If you prefer to listen to this episode on Apple Podcasts, you can do so here. Links: For product information, including Boxed Warning and Medication Guide: https://bit.ly/39aHtef Check out Becca’s blog, “My Crazy G ood Life”: https://mycrazygoodlife.com/ Podcast Peeps: https://themighty.com/groups/podcastpeeps The Mighty app: http://mgty.co/app Transcript: SPEAKERS Host, Ashley Kristoff; Becca Ludlum; Dr. Margo Butchee, MD, MPH Ashley Kristoff Welcome to The Mighty Podcast where we infuse the health space with positivity, humor and vulnerability. The Mighty is a safe and supportive community here to help you find the people and information you need to navigate your health journey. We’re so excited to spend some time together today. Today’s episode is sponsored by AbbVie and our guests have been compensated for their time today. Now let’s get into what the health we’re talking about today. Today’s episode of The Mighty Podcast is focused on Chronic Migraine. In addition, because we’ll be talking about an FDA approved prescription treatment, BOTOX ® (onabotulinumtoxinA), it’s important to remind you that there are benefits and risks associated with BOTOX ® . BOTOX ® prevents headaches in adults with Chronic Migraine 15 or more headache days a month, each lasting four or more hours. BOTOX ® is not approved for adults with migraine who have 14 or fewer headache days a month. As for important safety information to know about BOTOX ® : Effects of BOTOX ® may spread hours to weeks after injection, causing serious symptoms. Alert your doctor right away as difficulty swallowing, speaking, breathing, eye problems or muscle weakness can be signs of a life-threatening condition. Patients with these conditions before injection are at highest risk. Side effects may include allergic reactions, neck and injection site pain, fatigue and headache. Allergic reactions can include rash, welts, asthma symptoms and dizziness. Don’t receive BOTOX ® if there’s a skin infection. Tell your doctor your medical history, muscle and nerve conditions including ALS/Lou Gehrig’s disease, myasthenia gravis, or Lambert Eaton syndrome and medications including botulinum toxins, as these may increase the risk of serious side effects. We will discuss additional important safety information later during this presentation. And please check out the podcast description directing you to BOTOX ® Prescribing Information including Boxed Warning and Medication Guide. And lastly, this discussion is not intended to provide medical advice or care, so please speak with your healthcare provider if you have any questions about your personal medical condition or disease management. Today’s episode of The Mighty Podcast is focused on Chronic Migraine and BOTOX ® . I’m your host Ashley and I’m just so happy to be joined by Dr. Margo Butchee, a neurologist with Mercy Clinic in Oklahoma City and Becca Ludlum a food blogger running “My Crazy Good Life” blog. Welcome both of you. How are you guys doing today? Dr. Butchee I’m good. Thank you. Thank you for having us. Becca Ludlum Thank you so much. I’m great. Ashley Kristoff Yeah, thank you for being here. So, Dr. Butchee why don’t you tell us a little bit more about yourself. Dr. Butchee So, thank you so much for having me here today and I’m so honored to be part of The Mighty. I am a physician at Mercy Neurology Clinic in Oklahoma City, and I do specialize in treating patients with migraine. And so, I’d also like to share that I come from a long history of migraineurs. Really, this is the main part of what drew me to headache medicine. Also, the meaningful relationships I’m able to develop with my patients in really helping them during their time of greatest need to be there to help them during this critical period is what really drew me to medicine. And outside of being a physician I’m also a mom to three wonderful children. My oldest is Oliver, he’s six years old. Nolan is four years old. And my youngest is Elise, she’s three years old. Outside of practicing medicine, I really enjoy spending any extra time I have with my family. Ashley Kristoff Amazing. I’m so glad we have you here today. And it’s so amazing to hear that like the intersection relationship of lived experience and professional so excited to hear from you. Becca, do you want to tell us a little bit more about you? Becca Ludlum Sure, I’m Becca Ludlum. I live in Tucson, Arizona with my husband and two sons. I’m a food blogger and an entrepreneur. We have several different businesses that we run. My blog is called “My Crazy Good Life.” I started my blog when my boys were young and wrote a lot about raising them in the face of technology and how to parent them. But once they got old enough, they didn’t want me to write about them anymore. So, I was able to switch and write about something that I cared about (not that I didn’t care about them), I was able to write about something that I loved, which is nutrition and food. Healthy living, just kind of focus on a little bit indulgent and mostly healthy. I love reading. I love spending time with my family and friends. I love practicing yoga. I love to go to concerts. My husband and I just started a wood and metal business just during the pandemic and we had some extra time and started making metal rusted trellises and big metal torches and lanterns and we engrave wall signs and cutting boards and those fancy tumblers that you see everywhere on social media. So, we’ve been having a lot of fun. Through all of this I’ve been living with Chronic Migraine for over 20 years. Ashley Kristoff Wow. That’s incredible. Thank you for sharing. Just the breadth of like your metal and wood business just you got “jack of all trades” over here. Becca Ludlum We got a lot of stuff going on. Ashley Kristoff Alright, so let’s get into what Chronic Migraine is and some experiences around treating it and living with it. So, Dr. Butchee, we’re gonna start with you. Many people may know about migraine or maybe have experienced migraine at some point in their lives, but other people might not be so familiar with Chronic Migraine. So, what is the difference? Dr. Butchee So Chronic Migraine really is a complex neurological condition with an array of symptoms. Now specifically, Chronic Migraine is defined as 15 or more headache days a month, with the headaches lasting at least four or more hours. And unfortunately, there are 3.3 million Americans living with Chronic Migraine. So, to put this into perspective, if we place all of these people together in one place, that would constitute for the third largest city in the US. Ashley Kristoff There’s a lot more people living with Chronic Migraine than I even thought. Is the cause of Chronic Migraine known? Dr. Butchee So great question. We’ve made a lot of progress in recent years in understanding the cause of Chronic Migraine. And so, some of the most common causes that we know of include genetics, so half of your risk for developing migraine comes from your family history. So, remember, my mom and even my grandmother, we come from a long family history of migraineurs, so I am more likely to pass this along to my children as well. What you eat, drink can also play a role into your migraines. We know that caffeine, alcohol can trigger migraines, and even certain foods you eat such as foods high in MSG or in nitrates can also trigger migraines, and even skipping meals. Now weather changes, especially if you know I live in Oklahoma where we have a saying that if you don’t like the weather, just wait a few minutes, which is true because our weather can fluctuate wildly. And so, it’s the changes in the humidity, the temperature, air pressure, this can all lead to migraine. And remember, these are the most difficult for our patients to control. You don’t really have any control over how the weather behaves. Changes in sleep can also trigger migraine, whether it be too little sleep, too much sleep, a change in the sleep routine. These can all set up a migraine attack. And last but not least is stress and anxiety. And certainly, this past year has really challenged us as far as stress levels. And we know that this can trigger migraine and even the time period after stress can trigger a migraine. Ashley Kristoff Becca, I am curious to hear about your personal experience with Chronic Migraine. So, what were the first symptoms you experienced and what was that diagnosis journey like? Becca Ludlum My Chronic Migraine journey started literally out of the blue. So, nobody in my family has migraine, Chronic Migraine, I always say it has to start somewhere. I had a really bad headache that I couldn’t get rid of and I started experiencing other symptoms like nausea, sensitivity to light and smell, this constant, well what I know now is migraine, but constant headache that I just didn’t really understand it wouldn’t go away. And at the time of my diagnosis, I was having about 20 headache days per month. My diagnosis journey was not easy. It took a really long time, and I am still, 20 years later, learning more about why I get them and what causes them. First, we tried to rule things out like a brain tumor and optic nerve tumor, other more serious conditions. Made a lot of visits to pain clinics and literally pages of prescription medications that I had tried. I even had a home health nurse that had to come out to the house and administer IV medications to try to break one of the really bad migraines that I had had. For me a headache is something that I can take a few ibuprofen for and it’s gone whereas my migraine is totally different. They’re not all the same for me but most of them feel like a brain freeze, like when you eat ice cream too fast, except it doesn’t go away after a couple minutes. It just stays and not much helps. And so medications don’t usually help. Lying down makes me feel better. Most of the time I just I wait it out is pretty much what I do. Like I said my symptoms aren’t always the same. My migraines are not always the same and so sometimes I have really bad light sensitivity but then like I said earlier, like I love going to concerts so I can go to a concert and sometimes it’s fine. But then there’s other times where I can usually tell earlier in the day if I’m starting to be a little bit sensitive to loud noises or light then I know that’s it, concert’s off, no movies or anything like that. After a couple days of a migraine, I’m super tired. I call it a migraine hangover where I’ve taken some medication, and I’m kind of just trying to work my way back. And so those are also counted as migraine days. Ashley Kristoff That is very relatable. I think our audience who live with migraine and other chronic conditions are very much in tune with what you just said there. So how did you deal with this at the time, like when this was first happening, especially when something’s out of the blue like that, you know, how did that work? Becca Ludlum So it’s taken a long time for me to learn what my triggers are. And so over the years, I’ve slowly learned that I knew if I would eat something that I’m not supposed to eat like foods with nitrates, that was that was one of my first ones, and so I knew that if I could not like, like, I’m just gonna have bacon this morning with my omelet. It’s not a big deal. Knowing, so things like that I could kind of feel like coming on. And so then, you know, eventually you just you don’t do that, right? You learn like, no, it’s not worth it. And so, my coping strategy, besides avoiding things that I’ve noticed trigger migraines, my coping strategy is to just bow out of everything. And so, you know, we’re supposed to have date night, or if we have a family weekend planned, or any kind of outing, any kind of thing that we have, as soon as I feel one coming on, I do not try to power through it. I did for a long time, and it just doesn’t work. So that is my number one thing is as soon as one starts, I’m done. I’m out. And it’s just, it’s not good for anybody if I push through. Ashley Kristoff Yeah, I think it’s so important to have those boundaries and those limits and knowing your body the right way to know how you can move forward so I’m curious about you mentioned, like canceling plans, those sorts of things. So how did the people in your life react to this new diagnosis? Becca Ludlum So, I was at a place in my life where I was meeting a lot of new people. And so that was just me, they just, they knew me, and they knew that you know, and it’s kind of weird, because when you don’t have a migraine, you’re normal and everything looks fine, right? But then when you do, it’s like, that’s it done. But everybody was really good about it. And so, there are things where, you know, I tried to work a traditional job, it just didn’t work. My kids are super empathetic because they grew up seeing me have these. And so, everybody was really, really good about it. My husband has the patience of a saint. He’ll step aside and do anything that needs to be done while I have one to make sure that I don’t feel like I’m losing out or, ‘Oh, you know, I can’t make dinner tonight.’ So, people have been really great about it. Ashley Kristoff I’m so glad you had such supportive people in your life during this time. I am curious to know what people maybe didn’t understand about this experience with Chronic Migraine, or what came up when you were talking with other people? Becca Ludlum I would explain that, you know, I have Chronic Migraine and there’s certain things that I can’t do and unfortunately, I can’t expect when that’s going to happen. And sorry I can’t hang out, go with you, do whatever. People were really good about it. They were really understanding, friends and family both, really understanding. There were a lot of schedule changes that we had, a lot of last-minutes things that were postponed or changed. And thankfully, like I said, everybody’s been great about it. Learning is such an important part of this for me. And so, like I said earlier, 20 years later, I’m still learning what causes these. And I feel too like my body’s changed a little bit over the years. And so even though I learned one thing, well, now things are changing. And so, you know, my exercise routines changed totally. I noticed that one of the things that I loved to do was just causing way too much inflammation in my body and was triggering all these crazy migraines that I would get. And so, I was able to change that around a little bit, you know, without stopping my total exercise routine. My diet has completely changed and so my family’s been so good about that. But you know, slowly I’ve taken things out of my diet. Well now it’s gotten to the point where it’s no meat, no eggs, very limited dairy. And so, these are all things though, that it’s so easy to make that decision to stop. My family’s been really good about that. They’ve been very understanding about not having beef as much as we used to and it’s taken over 20 years, but all of these changes are helping. It’s not just about headache, it’s not something that you can push through and I, like I said, I go to movies, I go to concerts, I go to theme parks and as long as I don’t have migraine symptoms, I’m good. But if I try to do one of those things with a migraine, it’s just not, it doesn’t end well. It ends up with me being miserable, you know in bed somewhere and then usually the people that are with me are feeling bad I’ve learned that, so it’s just not worth it to push through. Ashley Kristoff For sure. Dr. Butchee, you want to give us a little bit more color for how other people might think about migraine and the kind of distinction versus a headache that you know, I think that a lot of people who aren’t familiar are really thinking their migraine is. Dr. Butchee Migraine is so much more than just a headache. It really is an array of symptoms. And that’s what really makes the condition so disabling. And so, in fact, the World Health Organization defines migraine as one of the most disabling illnesses. And it’s comparable to someone with dementia, quadriplegia and even active psychosis. And what’s really unfortunate about this is that some patients wait on average four years before speaking with their physician. So, I really encourage people out there to start keeping a headache diary. Start recording how often you’re having headaches, how long they last, and the severity of the headache and also start charting the symptoms that you have with it. So, you may not realize that all those symptoms may be related to your migraine. So, let your physician know that you’ve missed birthdays, because of your migraines. You’re on vacation and you had to stay back in your hotel. You couldn’t go out to dinner because you had a migraine. And I vividly remember in my childhood, my mom was on the couch the majority of the time because her migraines are so severe. This is the important things that your physician needs to know in order to properly give you a diagnosis. Ashley Kristoff Becca, do you have any other real-life examples that you want to share to just contextualize that a little bit? Becca Ludlum Like, of course, right off the bat, I’m like, give me 10 minutes, I can give you 30 of them. You know, a lot of things that I missed were time with my kids by the pool. Summer was really stressful here for me. We live in Arizona, and so it gets really hot, you know, we have a pool, so they wanted to be outside during the summer. Sometimes it was really hard to [kind of] sit in the pool with them without having [you know] good shade and that was tough. Movie nights, you know, things that involve like bright lights, like that has been one of the things that really, I’ve noticed where it’s like, oh, like I really wanted to take you guys to the movies tonight but it’s just not going to work out. So, let’s do something else. Nights out with friends and family, many date nights that we’ve missed many, you know, dinners with friends. We always make it up at some point, but kind of a bummer when everybody’s all excited to go out and like oh, guys, sorry, I have to cancel. Ashley Kristoff Yeah, I think that makes a lot of sense and I think too that that really drives home Dr. Butchee’s point of just sharing those real-life examples. It helps you be empowered as an individual but also be empowered as a patient to say these things to your doctor to help them understand. So now I am wanting to discuss how you found your current Chronic Migraine doctor, like what types of things did you look for in a doctor? And what was that journey like? Becca Ludlum So, I was referred to my doctor by a friend, but I’ve lived in several different places. What I found is that there are not a ton of migraine specialists in each city. And the ones that you do find usually have a really long waiting list to be able to see them and so I learned from the last move that we made that I need to pre-plan for when I moved there. So, we knew that we were going to move, I made an appointment as soon as we found out that we were going to move so that I was able to not have as long of a wait when I moved and then not have as much of a break in between appointments. And so that was really helpful. But I ended up waiting, it was about six months, to be able to see the doctor but I feel like she really understands me. I really like her approach. She gets migraines as well she has Chronic Migraine so that, it helps, it really helps to know that they understand how you’re feeling. And, you know, while she said, you know, hey, you know, this is what I do for mine. I know that that doesn’t translate. And she was very clear about that too. Just because this works for me, doesn’t mean it works for you. But like, in general, she was like, here’s a path that I took, you know, I started looking at foods that I ate, exercises that I did, ways that I move my body and how all those things and so she really was able, she was in a position where she was able to help me kind of brainstorm, you know, my triggers and what brought on my migraines. And I love that she takes a whole-body approach. She doesn’t just focus on headaches and migraines. She looks at many factors, like I said, like exercise and food and all these different things that could be going on and so I really appreciated that. Ashley Kristoff Yeah, you sound like you have a wonderful doctor. Dr. Butchee, could someone with Chronic Migraine see any neurologist or is there something that they should be looking out for? Dr. Butchee So not all neurologists specialize in headache medicine. So, it really is important that you do your research, find the ones that do. In the US there are neurology practices with headache specialists, and they have more knowledge about treatment options that are available, therapy and lifestyle changes in order to help patients with Chronic Migraine. Ashley Kristoff So, speaking of treatment, let’s get into what that could look like for someone like Becca. Dr. Butchee So, there are two types of treatment when it comes to Chronic Migraine. One is acute and the other is preventive. The goal of acute treatment is to stop the symptoms of a migraine attack after they start. And so, this differs from preventive treatments that can help headaches and migraines before they start. And one preventive treatment option is BOTOX ® for Chronic Migraine. Ashley Kristoff I see and Dr. Butchee could you share any important information our audience should know about BOTOX ® ? Dr. Butchee BOTOX ® prevents headaches in adults with Chronic Migraine 15 or more headache days a month, each lasting four or more hours. BOTOX ® is not approved for adults with migraine who have 14 or fewer headache days a month. Effects of BOTOX ® may spread hours to weeks after injection, causing serious symptoms. Alert your doctor right away as difficulty swallowing, speaking, breathing, eye problems or muscle weakness can be signs of a life-threatening condition. Patients with these conditions before injection are at highest risk. Side effects may include allergic reactions, neck and injection-site pain, fatigue, and headache. Allergic reactions can include rash, welts, asthma symptoms, & dizziness. Don’t receive BOTOX ® if there’s a skin infection. Tell your doctor your medical history, muscle or nerve conditions (including ALS/Lou Gehrig’s disease, myasthenia gravis, or Lambert-Eaton syndrome), & medications, including botulinum toxins, as these may increase the risk of serious side effects. Ashley Kristoff Thank you, Dr. Butchee for sharing that important information with our community. So now Becca, you actually use BOTOX ® for Chronic Migraine. So, when did you first find out about this as a treatment option? Becca Ludlum I actually found out about this as a treatment option a long time ago. My grandfather is actually the person who first told me about BOTOX ® for Chronic Migraine. Years ago, he followed the news that BOTOX ® was approved by the FDA for preventive treatment of Chronic Migraine and would often send me newspaper articles about it. And initially, I resisted a bit because I was unsure of exactly what it was and how it would work. But it seemed like he knew it was what was good for me before, before I did. Ashley Kristoff Yeah, what made you, you know, decide to do it and try it? Becca Ludlum About six years ago, I decided to look into BOTOX ® for a few different reasons. So, my headache and migraine days were getting a little out of control. I was feeling really overwhelmed and tired of trying different medications and not meeting my treatment goals. And so, my neurologist suggested BOTOX ® and explained the benefits and risks with treatment. Since she’s also a Chronic Migraine patient, she let me know that she received BOTOX ® injections for her Chronic Migraine, and it reduced the number of headache and migraine days she had experienced. I remember her saying to me, we finally got your medication stable and you’re not meeting your treatment goals that we set. And so, let’s try this and see what happens. Ashley Kristoff Yeah, I think that makes total sense. Dr. Butchee, can you talk about what treatment with BOTOX ® actually looks like for people with Chronic Migraine? Dr. Butchee BOTOX ® for Chronic Migraine is administered in 31 different injection sites across seven head-neck muscle areas that may be associated with migraine. So, BOTOX ® prevents on average, eight to nine headache days and migraine, probable migraine days a month versus six to seven for placebo. So, two rounds of treatment are needed to feel the full effects at 24 weeks. So, I know injections can be intimidating for some and the experience is different for everyone. Becca, can you describe your experience with BOTOX ® for Chronic Migraine? Becca Ludlum I started feeling results about four weeks after the first treatment. And so just like you mentioned, two rounds of treatment are needed to feel the full effect at 24 weeks. But I started to notice some differences right around the four-week mark. Ashley Kristoff Yeah, I just need to pause for a second because Dr. Butchee mentioned 31 injections. What were your thoughts about that many shots? Becca Ludlum Everybody’s experience may be different but for me the injection felt like a small pinch or prick. I am no fan of needles, but it’s not nearly as painful as a migraine attack and so that’s what I think every single time one goes into my head I’m like, it’s not as bad as a migraine. It’s not as bad as a migraine, 31 times. It took about 10 minutes for my doctor to administer the injections and she took as many breaks in between as I needed, and she knows which one’s kind of caused me to tense up and she’ll stop for a second and tell me like let me know when you’re ready. There is no downtime, so I get it at my doctor’s office, I’m able to leave, I’m able to drive home and I’m good. I’m just able to go home and resume my day. Ashley Kristoff So, what do you think about life with Chronic Migraine now that you have a reduction in headache and migraine days? Becca Ludlum I’m so glad that I’ve managed to find and build a relationship with a great doctor who has been part of my care team. And I’ve found an effective treatment for my Chronic Migraine that I never really believed was possible. And I can’t lie a big part of me wishes that I hadn’t waited so long to pursue more treatment options. Ashley Kristoff That makes sense. Dr. Butchee, can you tell us what side effects our audience should know about BOTOX ® for Chronic Migraine? Dr. Butchee The most common side effects of BOTOX ® for Chronic Migraine are neck pain and headache. There are other side effects that also occurred in the Chronic Migraine clinical trials. This does not cover all the possible serious side effects of BOTOX ® so it’s important that patients speak to their doctor about the Important Safety Information about BOTOX ® and the BOTOX ® Prescribing Information. Ashley Kristoff Dr. Butchee I bet a lot of people have some of those same questions and concerns that Becca had. What do you say to someone who is looking to get ahead of their Chronic Migraine  and try BOTOX ® ? Dr. Butchee So, first and foremost, you need to be diagnosed with Chronic Migraine. So, I encourage people to keep a headache diary and bring this along with you when you see your physician. This will really help identify patterns, make a correct diagnosis and really help move forward with the correct treatment plan that’s right for you. Secondly, people should understand that BOTOX ® for Chronic Migraine is around a 10-minute procedure every three months. As I said there are 31 injections in seven different areas of the head and neck. These are the areas that may be associated with migraine. I know most people are no fan of needles, you may feel mild discomfort and injections feel like tiny pinches or pinpricks. And my patients by and large tell me that it hurts far less than a migraine attack. And thirdly, I know a lot of people are concerned about cost, you can ask your doctor or their front office staff about any patient savings programs that may be available that can help with the out-of-pocket costs. Ashley Kristoff What would you like folks to know who are considering trying BOTOX ® treatment for Chronic Migraine? Dr. Butchee So, a survey of 71 people show that 97% of BOTOX ® patients plan to keep using it and 92% wish that they had talked to their doctor and started treatment sooner. So really, I hope this information along with Becca’s experience gives your listeners the motivation to talk to their health care provider and to see if BOTOX ® might be the right treatment for them. Ashley Kristoff Great and Dr. Butchee what is something that potential patients might not know about BOTOX ® for Chronic Migraine? Dr. Butchee So, samples may be available for new patients to evaluate efficacy and safety. And this can be a really helpful way for patients to get started and see if the treatment might work for them. It’s an opportunity for patients to see if BOTOX ® is right for them, and also an opportunity for them to start BOTOX ® treatments sooner. Ashley Kristoff I think that’s really great. I’m sure that goes such a long way in like demystifying the experience and making people feel comfortable with trying this treatment. So, Becca, I know you’ve got a lot on your plate with your family and your business in the food blogging world. What made you want to speak out about living with Chronic Migraine and how can other people start? Becca Ludlum I share health and wellness information as it comes up with my readers on “My Crazy Good Life.” I shared one day about my BOTOX ® injections and had a ton of questions so I wrote an article on my blog titled “Why I Use BOTOX ® for Chronic Migraine.” My blog focuses on using minimally processed foods to make delicious and nutritious recipes, which just happens to go right in line with, like the reason that I use those ingredients is to help avoid migraines. And so, I’m always happy to share my experiences with readers and others in my community. I’ve learned from others over the years, and I will always share my experiences so others can learn from me as well. You can support loved ones with Chronic Migraine by listening and offering to help whether that means cooking, taking kids to events or just sitting with someone. Everyone’s experiences are so different, and I think that talking with your doctor and learning more are the best ways to empower yourself. Ashley Kristoff Well, thank you for sharing so much about your experience and your journey. I think just giving people a place to start sometimes when they hear about this diagnosis is such a great place. So, having all of these learnings that you’ve had in your life I’m sure is such a helpful way for new and people who have been around the block to help figure out new ideas and new things that might work and help them in their management. Dr. Butchee, what advice do you have for somebody who is looking for a doctor? Dr. Butchee So as Becca and I have said before, remember that not all doctors are trained to treat headache disorders like Chronic Migraine. So, it’s really important that you do your research to find a physician that is dedicated to treating Chronic Migraine. And this is really important because the diagnosis is key in order to get the right treatment. A great resource to use would be BOTOX ® ChronicMigraine.com. And you can select your location and see if there is a healthcare provider close to you that treats Chronic Migraine. Ashley Kristoff Thank you for sharing that. Becca, what would you say to somebody who is kind of in the same position that you were in a few years ago dealing with Chronic Migraine? Becca Ludlum There are a few things that I’d say. One of them is don’t suffer in silence because help is available. Bring a headache journal with detailed information about the weather, your daily activities and what you eat and drink. Even something that maybe seems small and not important to you might be something that just glares to your doctor. Ask questions and if you feel that something doesn’t apply to you, or that they’re not understanding you, make sure that you clarify yourself so that your doctor understands exactly what you’re feeling and when. The faster you seek help, the faster you’ll be able to get on a treatment plan that could reduce your number of headache and migraine days per month. I’d say don’t get discouraged if your initial treatments don’t get you to your full treatment goals. Every person’s body is different and there is no one size fits all solution. Take the time to look into different options that are out there, you may have to change your treatment plan to come up with what will work for you. Ashley Kristoff I think that is wonderful advice to give the community. So now we are at the point in our podcast where we like to do this thing called self-care corner and we like to talk about self-care that has fulfilling us or helping us recently. So, do either of you want to go first and share? Maybe Becca, some of your current self-care go-tos? Becca Ludlum Sure. So, what used to be my daily exercise goal is now just a goal for overall self-care. So sometimes it means that I work out, sometimes it’s taking a yoga class or meditating and sometimes on the really crazy busy days, it’s setting time aside to make my favorite dinner. It’s all about being flexible and understanding that my needs can change every day. Ashley Kristoff I love that. Dr. Butchee do you want to share your self-care? Dr. Butchee My self-care is making sure I devote time to spend with my loved ones. And I’m so blessed to have this with my husband Ryan, and my three children, Oliver, Nolan and Elise. Self-care means making sure that you give yourself time to nourish and recharge your mind, your body and your soul. And it’s important that you choose who you spend time with. You really want to make sure that you spend time with the right people because your time is valuable. So, I encourage you to seek people who uplift you, people who inspire you to be better every day and people who challenge you to grow. When I spend time with my loved ones, and I know this is very hard and I’m still working on it myself, but I really do my best to be 100% present, and put that cell phone away. And so, self-care for me really is spending time with my loved ones. Ashley Kristoff Thanks for sharing. I love that. And I love that you say to that it is a little bit hard to do some of these things. And self-care isn’t always pretty and easy, so I just appreciate that honesty here. Recently, my self-care is I’m a very creative person so something that I wanted to try is just something new. So, I actually took my hand at costume making, and it’s been a really, really fun time. It’s really challenged me, and it’s forced me to really spend that time with myself as well. So, it’s been just a wonderful activity. Ashley Kristoff So, let’s share our final thoughts to wrap everything up here. So, are there any thoughts or resources that either of you would like to share about Chronic Migraine with The Mighty community Becca, do you want to start? Becca Ludlum Of course, I’d of course talk to your doctor and visit BOTOX ® ChronicMigraine.com for more information. And if you’re looking for delicious and healthy recipes, you can find recipes that I create over at MyCrazyGoodLife.com. Ashley Kristoff Love that I’ll have to check those out. Dr. Butchee, do you have any resources to share? Dr. Butchee I encourage people with Chronic Migraine to check out one of the many advocacy organizations online. There are great educational resources and opportunities to connect with patients in your local community who also live with Chronic Migraine. Ashley Kristoff That’s awesome. All right. Thank you for sharing. Becca, Dr. Butchee, I just want to thank you both for being here today to shed some light on Chronic Migraine for our listeners. Dr. Butchee Thank you for having us. Becca Ludlum Thank you so much for having us. Ashley Kristoff Yeah, thank you so much for sharing your perspective, your experiences. It’s just really wonderful and I really hope our community takes a lot away from this talk. So, thank you again for listening to this episode of The Mighty Podcast. If you want to continue this conversation, head over to TheMighty.com or download The Mighty app to become part of our community. Thank you to AbbVie for sponsoring this episode. We’d love for you to give us a rating and review on Apple Podcasts, follow us on Spotify or if you’re listening on The Mighty give this page a heart. Join us on our next episode and stay Mighty. Please stay tuned for more Important Safety Information about BOTOX ® . BOTOX ® ( onabotulinumtoxinA) Important Information Indication BOTOX ® is a prescription medicine that is injected to prevent headaches in adults with chronic migraine who have 15 or more days each month with headache lasting four or more hours each day in people 18 years or older. It is not known whether BOTOX ® is safe and effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine). IMPORTANT SAFETY INFORMATION . BOTOX ® may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems anytime, hours to weeks after injection of BOTOX ® : Problems swallowing, speaking or breathing, due to weakening of associated muscles can be severe and result in loss of life. You are at the highest risk if these problems are pre-existing before injection. Swallowing problems may last for several months Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms including loss of strength and all over muscle weakness, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice, trouble saying words clearly, loss of bladder control, trouble breathing and trouble swallowing There has not been a confirmed serious case of spread of toxin effect away from the injection site when BOTOX ® has been used at the recommended dose to treat chronic migraine. BOTOX ® may cause loss of strength or general muscle weakness, vision problems or dizziness within hours to weeks of taking BOTOX ® . If this happens do not drive a car, operate machinery or do other dangerous activities. Do not receive B OTOX ® if you : are allergic to any of the ingredients in BOTOX ® (see Medication Guide for ingredients); had an allergic reaction to any other botulinum toxin product such as Myobloc ® (rimabotulinumtoxinB), Dysport ® , (abobotulinumtoxinA) or Xeomin ® (incobotulinumtoxinA); have a skin infection at the planned injection site. The dose of BOTO X ® is n ot the same as, or comparable to, another botulinum toxin product. Serious and or immediate allergic reactions have been reported including itching, rash, red itchy welts, wheezing, asthma symptoms, or dizziness or feeling faint. Get medical help right away if you experience symptoms. Further injection of BOTOX ® should be discontinued. Tell your doctor about all your muscle or nerve conditions such as ALS or Lou Gehrig’s disease, myasthenia gravis or Lambert Eaton syndrome, as you may be at an increased risk of serious side effects including difficulty swallowing and difficulty breathing from typical doses of BOTOX ® . Tell your doctor about all your medical conditions including if you : have or have had bleeding problems; have plans to have surgery; had surgery on your face; weakness of forehead muscles; trouble raising your eyebrows; drooping eyelids; any other abnormal facial change; are pregnant or plan to become pregnant (it is not known if BOTOX ® can harm your unborn baby); are breastfeeding or plan to (it is not known if BOTOX ® passes into breast milk). Tell your doctor about all the medicines you take , including prescription and over-the-counter medicines, vitamins and herbal supplements. Using BOTOX ® with certain other medicines may cause serious side effects. Do not start any new medicines until you have told your doctor that you have received BOT OX ® in t he past. Tell your doctor if you received any other botulinum toxin product in the last 4 months; have received injections of botulinum toxin such as Myobloc ® , Dysport ® , or Xeomin ® in the past (tell your doctor exactly which product you received); have recently received an antibiotic by injection; take muscle relaxants; take an allergy or cold medicine; take a sleep medicine; take aspirin-like products or blood thinners. Other side effects of BO TOX ® in clude: dry mouth, discomfort or pain at the injection site, tiredness, headache, neck pain, eye problems: double vision, blurred vision, decreased eyesight, drooping eyelids, swelling of your eyelids, dry eyes; and drooping eyebrows. For more information, refer to the Medication Guide or talk with your doctor. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088. Please see BOT OX ® fu ll Product Information including Boxed Warning and Medication Guide at www.BOTOXChronicMigraine.com and at the link in the podcast description. Thank you for listening!

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The Critical Role of Diversity, Equity, and Inclusion in Clinical Trials

Clinical research has impacted your life, even if you haven’t been aware of it. For anything from life-saving medical technologies to products like sunscreen, you have clinical trials to thank. Trials help to ensure the safety and efficacy profiles of the FDA-approved products and treatments we use, offer hope for cures to debilitating diseases, and are an essential component of healthcare. The reality is this—for patients worldwide, clinical trials aren’t just a nice-to-have, they’re a need -to-have. And clinical trials need people. While certain aspects of health are advancing, some people continue to be left behind. There is an abundance of evidence showing that factors like gender, race, ethnicity, age, or co-morbidities can cause disease to strike groups differently. These factors can also determine if a medicine or therapy is safe and effective for a particular group. For this reason, all groups must be represented in clinical research so that investigational medicines can be studied across different patient populations. Yet, major gaps still exist. In fact, a recent study of trials involving 150,000 patients in 29 countries over the past 21 years showed that the ethnic makeup of the trials was about 86% White . 1 The reasons for these disparities are varied and complex. Underrepresented groups may feel a lack of trust in the clinical research process, may not be aware of the participation options available, and may experience logistical challenges. These barriers may include transportation costs and financial implications from taking time off work to participate. The good news is that these disparities have come to the forefront, and rectifying them and promoting better diversity, equity and inclusion (DE&I) in clinical research has become a major focus for the healthcare industry. The Janssen Pharmaceutical Companies of Johnson & Johnson has been prioritizing DE&I in clinical trials for some time, with the goal to build a future of equity in healthcare. Janssen’s DE&I in Clinical Trials team began operating in 2018 as a strategic initiative to shape the future of clinical research across all of the therapeutic areas where Janssen focuses. Team members believe that clinical trials are ultimately about relationships—and that strategic collaborations with investigators, physicians, and key stakeholders can help them effectively communicate the value of clinical research to potential trial participants. Their work centers around meeting the needs of their partners, easing barriers to access to clinical trials and streamlining the experience for all involved parties. When asked about how Janssen can make an impact in this area, Associate Director of Diversity & Inclusion in Clinical Trials, Ramona Burress, shared, “We need to transparently communicate to patients and communities what to expect and what not to expect when participating in clinical research, how they are protected and why their participation is so crucial in the development of treatments. We hope to continue to build meaningful trust with patient communities and create diverse clinical trials for investigational drugs that may serve the needs of all patients who may need them.” Having open and honest conversations about health equity is an integral part of understanding and removing the barriers to participation so that actionable, tangible solutions can be created. Janssen continues to work to better acknowledge, recognize and address the barriers preventing clinical trial participation for underserved and underrepresented populations who may face fear, mistrust, lack of awareness of the options available, and logistical challenges. Among other areas across its portfolio, Janssen is leading the charge in research in immune-mediated diseases, which are so often distressing and debilitating for the patients who face them, and which traditionally have presented patients with limited treatment options. Patients living with an immunological condition such as ulcerative colitis, hidradenitis suppurativa and rheumatoid arthritis, among others, who would like to contribute to more equitable and inclusive research, can visit the Janssen Global Trial Finder and learn more about the Company’s commitment to diversity on their Research Includes Me website. Learn more By putting a focus on relationships first in clinical research, Janssen is working to reduce barriers and increase participation for historically underrepresented and underserved groups, including in disease areas like immunology where there historically have been unmet patient needs and few or no advanced treatment options for a number of chronic autoimmune conditions, such as lupus, Sjögren’s syndrome, and hidradenitis suppurativa. People need all kinds of clinical research. Clinical research needs all kinds of people. With a focus on diversity, equity and inclusion driving its approach to clinical research, Janssen is creating an industry-leading impact for all the patients and sites they serve. explore more with janssen 1 Editors T. Clinical trials have far too little racial and ethnic diversity. Scientific American. https://www.scientificamerican.com/article/clinical-trials-have-far-too-little-racial-and-ethnic-diversity/. Published September 1, 2018. Accessed October 2021.

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My Wife Noticed My TD Symptoms First, Then I Found Treatment

Steve, a Fort Worth, Texas native and married father of five who enjoys singing and watching football, shares his story about living with a mental health condition and tardive dyskinesia (TD). Steve shares his story because he believes there should no longer be stigma attached to talking about mental health and he wants people to know that there are treatment options available for those living with TD. In his early 30s, Steve started noticing bipolar disorder symptoms and found he was withdrawing from society — while also struggling with substance abuse. He was later diagnosed with bipolar disorder, depression and anxiety. After seeking treatment for his mental health, Steve was prescribed a variety of medications. Approximately four years later, Steve’s wife began to notice his involuntary facial movements. “My wife would say, ‘why do you do that with your mouth?’” recalled Steve. However, Steve didn’t know what was causing his facial movements and he never had an answer for her.  Steve chewed gum constantly to try to cover up his facial movements. After seeing a video of himself singing karaoke, Steve was able to see just how pronounced his uncontrollable movements were. “This is when it really hit me that my mouth movements did not look normal,” he explained and added, “I was ashamed about how my mouth was moving. The symptoms really ruined my self-esteem and confidence for a while.” Steve was now fully aware he was experiencing uncontrollable movements but did not initially know that his erratic and jerking facial movements had a name. Steve made an appointment with his psychiatrist and discussed the uncontrollable movements he was experiencing. The psychiatrist diagnosed Steve with tardive dyskinesia and explained the treatment options. For Steve, it was a relief to finally have a diagnosis and real information about his uncontrollable movements. TD is a real, chronic condition that affects approximately 600,000 people in the U.S. The uncontrollable movements from TD may be disruptive to people’s lives due to the symptoms’ themselves and the impact they can have on social and emotional well-being . TD is associated with taking certain mental health medications used to treat bipolar disorder, schizophrenia, depression, and/or anxiety. Steve and his psychiatrist discussed INGREZZA ® (valbenazine) capsules, a prescription medicine to treat adults with the uncontrollable movements of TD. After talking with his doctor and reviewing the benefits and side effects, including the most common side effect of sleepiness, Steve and his psychiatrist decided INGREZZA was a good choice for him.  After taking INGREZZA, he was happy to see the medication was working for him. This is just Steve’s experience, others may have a different experience with INGREZZA. Ingrezza is one pill, once-daily and Steve takes it as his doctor prescribed. Please see Full Important Safety Information below. After experiencing less body movements Steve noted, “my confidence is much better.” “I smile more.” Now that Steve is able to treat his TD, he is passionate about raising awareness of TD and letting others know that they can manage their uncontrollable movements. Interested in learning more about INGREZZA? You can check out resources about tardive dyskinesia and if you need help finding a healthcare provider with experience diagnosing and treating TD, there is a Find a Specialist tool. Learn More Important Information Approved Use INGREZZA ® (valbenazine) capsules is a prescription medicine used to treat adults with movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia). It is not known if INGREZZA is safe and effective in children. IMPORTANT SAFETY INFORMATION Do not take INGREZZA if you: are allergic to valbenazine, or any of the ingredients in INGREZZA. INGREZZA may cause serious side effects, including: Sleepiness (somnolence). Do not drive, operate heavy machinery, or do other dangerous activities until you know how INGREZZA affects you. Heart rhythm problems (QT prolongation). INGREZZA may cause a heart problem known as QT prolongation. Symptoms of QT prolongation may include: fast, slow, or irregular heartbeat dizziness or fainting shortness of breath Tell your healthcare provider right away if you have a change in your heartbeat (a fast or irregular heartbeat), or if you faint. Abnormal movements (Parkinson-like). Symptoms include: shaking, body stiffness, trouble moving or walking, or keeping your balance. Before taking INGREZZA, tell your healthcare provider about all of your medical conditions including if you: have liver or heart problems, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. Tell your healthcare provider about all the medicines you take , including prescription and over-the-counter medicines, vitamins, and herbal supplements. The most common side effect of INGREZZA is sleepiness (somnolence). Other side effects include changes in balance (balance problems, dizziness) or an increased risk of falls, headache, feelings of restlessness, dry mouth, constipation, and blurred vision. These are not all of the possible side effects of INGREZZA. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit MedWatch at www.fda.gov/medwatch or call 1-800-FDA-1088. Please see accompanying INGREZZA full Product Information This promotional article is sponsored and developed by Neurocrine Biosciences Inc. ©2021 Neurocrine Biosciences, Inc. All Rights Reserved CP-VBZ-US-1687  10/21

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