Listen to The Mighty Podcast episode, “Chronic Illness Misconceptions” 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 Staff members Ashley Kristoff, Heidi Cope and Kat Harrison along with Mighty Super Contributor Charles Mickles discuss their experience living with chronic illness and the misconceptions they have faced along the way.
If you’d prefer to listen to this episode on Apple Podcasts, you can do so here.
Links:
- This episode was sponsored by Talkspace: go to https://bit.ly/Talkspace2021 to get $100 off with code MIGHTY
- Charles Mickles: https://themighty.com/u/charlesmickles/
- Podcast Peeps: https://themighty.com/groups/podcastpeeps/
- The Mighty App: http://mgty.co/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. Today’s episode is sponsored by the online therapy platform Talkspace. We’ll talk more about this later in the episode. Now let’s get into what the health we’re talking about today.
Hi, Mighties, my name is Ashley Kristoff. I work for The Mighty and I’m going to be your host/wizard extraordinaire on this episode. Today we’re going to be talking about misconceptions around chronic illness. I am very excited about all the guests we have here to discuss this topic. We have Heidi Cope, Kat Harrison and Charles Mickles joining me today. Heidi, do you want to share a little bit about yourself?
Heidi Cope
Sure, thanks, Ashley. My name is Heidi and I work at The Mighty. I love that rhyme so much that that’s one of my main things I am very much into and spend an extraordinary amount of time reading why fantasy novels. That is my passion after work. I also like cooking, baking and doing a lot of PT exercises and anything that doesn’t involve standing up.
Ashley Kristoff
I support not standing up. So I’m guessing you don’t have a standing desk.
Heidi Cope
I do not.
Ashley Kristoff
Cool. Alright, Kat, do you want to give a little bit more about yourself?
Kat Harrison
Yes, I am Kat Harrison. I work on The Mighty’s community team, which means I basically get to hang out with cool people all day long on the internet. I’m also a children’s book author. So I’m an adult, but I spend a lot of time reading kid’s books. And it’s great. I have a really cute dog named Doxon who I take too many photos with.
Ashley Kristoff
Love that never too many photos of pets, so absolutely support that. Charles, do you want to give a little bit more background about you?
Charles Mickles
Oh, sure. My name is Charles Mickles, just retired in December from education as a principal, I’m now an educational consultant, but also the manager of a Glass Company. And I do a lot of writing and speaking. And I have two children, a couple of dogs and I’m a huge science fiction fan, especially Star Wars.
Ashley Kristoff
Love it. Alright, so like I said, on today’s episode, we’re going to be talking about chronic illness. Before we really get into the meat of the conversation, we want to do something a little fun and lighthearted to get us warmed up a little bit. So the question I have for all of you to answer today is if your chronic illness was a book, what type of book would it be? And why? Feel free to just jump in if you’d know if you know what you want to say.
Kat Harrison
I see the gears turning.
Charles Mickles
I think it would have to be a comedy. I’ve often joked with people that because of the stuff I’ve dealt with, you couldn’t write it if it was a sitcom, nobody would believe it. So just be kind of a fantasy humorous story.
Heidi Cope
I think for mine, it would–so my chronic illness often comes in teens and teen girls. And I think that, for me, my chronic illness would be a new adult novel. And that’s because it’s usually a coming-of-age story. It’s usually these teenagers who are trying to figure something out, they have their highs and lows. And throughout it, they have to live with something for life, whether that’s an incredible power. And I think that living with a chronic illness is sometimes like a superpower. So I think that that would be what mine would be like.
Ashley Kristoff
So like a coming-of-age superhero story?
Heidi Cope
Yeah. And just kind of like fantasy trying to figure things out, they are always not in the know, they have to find somebody or get some information and just try to really just find out what works best for them and how they can shine and so that’s kind of what I think that would be like.
Kat Harrison
Oh, man, those were good answers. I think mine would be a sarcastic memoir called “Not Just A Headache“. Because I live with chronic migraine and I just get really sick of people telling me that like, oh, I have a bad headache too. So it would be called that.
Ashley Kristoff
I love that I think for me and my experience I was thinking about actually I ended up thinking about like those stories that you kind of have an idea of where they’re going and then there’s like a twist. Like they’re poorly written, they have a twist that comes out of nowhere and you’re like, wait, what, like what’s going on? And that’s like most of the book is like you get halfway through it and then it just twists. You’re like, alright, I guess we’re going in this direction now.
So let’s dig into today’s topic a little bit more than which is misconceptions around chronic illness. And I know some folks who are listening might not know what chronic illness is and I’m sure each of us could give you a very lengthy definition as to what having chronic illnesses what it means but just to put it very simply the difference between a chronic illness and just say an acute illness is most of the time acute illnesses are something that can heal or something that can be fixed or treated and it’s gone. Chronic illnesses typically are lifelong or long-lasting things and it’s much more typically about symptom management than it is about pure recovery or anything like that. So just so you got an idea of what chronic illnesses is if you are unfamiliar, and now I just want to dig in a little bit to each of our chronic illnesses. I know everyone here has very different experiences with chronic illness. And I think we’ll get into that as well. But does anyone want to talk about what chronic illness they have? Explain it kind of briefly, for anyone who doesn’t know and how, you know, impact your experience around that.
Kat Harrison
I’ll go first. So my story’s interesting because I actually had something happened to me that caused most of my health problems when I was 15, I had an ear infection that kind of spread throughout my skull, and the antibiotic that I was given actually poisoned me. And so because of that, I lost my balance system, which is a really fun way of being like, I don’t feel elevators, I don’t feel roller coasters, I felt a lot. And every single day since then, I’ve had a migraine. That makes 18 years of chronic migraine. It affects my life and every single shape or form. I have it more under control now than I used to. But it’s mostly because I’ve had to like compromise and sacrifice a lot of things to get to a quality life that I feel good about.
Heidi Cope
I can go next. So I actually was diagnosed with dysautonomia. And the subtype for that is called postural orthostatic, tachycardia syndrome or POTS. About four years ago, I was actually living abroad and had what we believe is likely a viral infection. And after that, that viral infection gives you the post-viral syndrome. So from one day to the next one day, I was fine. And the next day I wasn’t. And the extent that the virus can damage inflame or have some sort of reaction, people are still kind of confused as to what the result is. But it changed the way that my autonomic nervous system functions in my body. So essentially, the autonomic nervous system regulates your temperature, your heart rate, your blood pressure, everything that you don’t really consciously think about. And so for me that no longer works correctly. So now I live with a body that sometimes is struggling in terms of having a fast heart rate, or low blood pressure, or maybe I’m just sweating all the time. Or maybe I’m cold, and I’m having tremors all the time. It just always fluctuates in that way. It’s actually something that is quite common. A lot of people are talking about it now because people are developing it from COVID-19 and is something that is typically experienced by teen girls. Now, because of COVID-19. It’s actually becoming quite a lot more talked about outside of this room,
Charles Mickles
I actually battled two chronic illnesses. When I was 15, I was diagnosed with rheumatoid arthritis. By the time I was 19, I’d had my first of three hip replacements. And so I’ve battled that for over 30 years. And then two years ago, after years of searching and four different doctors, we also discovered I had early-onset Parkinson’s disease. And so yeah, for me, it’s been an experience of being trapped in a body that feels like it’s about 150 sometimes, as a young person, and all the things that come along with that, you know, most people that I know that battled these diseases are much older than I am, it’s been a challenge for us and our family, as we’ve kind of found our way with dealing with these chronic illnesses that normally don’t experience until later in life.
Ashley Kristoff
Yeah, absolutely. And I think we’re gonna even touch on the age factor as we jump into some misconceptions later. Charles, I am joining you with two chronic illnesses. And the fun thing is this, this episode recording is so prescient because I haven’t told anyone here yet. So this is news. I got diagnosed with a new chronic illness yesterday. So this is how new this and how, like prescient this information is. So the one that I’ve lived with for a couple years now is hypothyroidism. As a result of having thyroid cancer, I don’t have a thyroid, therefore, I never had enough hormone. So I’m technically always in a state of hypothyroidism. I have medication that can bounce me between the hypo and the hyper, which is the overactive thyroid just because it’s trying to do the job that an organ used to do with that comes a lot of fun symptoms and side effects. your thyroid regulates things like your metabolism, your hormones, so any symptoms that you might experience around those things are symptoms that I might experience on any given day. So yeah, yesterday, I got a second diagnosis of ulcerative colitis, so probably won’t talk about that too much. But I think it is funny that we are recording this episode today. This is less than 24 hours old, and we are talking about it so yeah, that’s I can’t even talk about what that really means right now because I don’t really know yet. So we have a lot of other things we can touch on. In the meantime, we really want to dig into misconceptions around chronic illness today. Like everyone here has kind of shared all of our chronic illnesses kind of came from really different sources really different causes, so to speak. And that being said, there is a lot of commonalities with what people in chronic illness experience in terms of misconceptions in terms of the way the outside world, people who do not have chronic illness view chronic illness. So I don’t know if anyone has like a big one they want to start with, I know there are some like huge ones we can talk about. But I really want to know, like, which ones or even one really affect you the most and your day to day or in your, you know, normal going through life.
Charles Mickles
Yeah, I think for me, it’s just the misunderstandings, you have actually had people. You know, when I did one activity within I couldn’t do another one, they would make comments like, oh, so you can do that but you can’t do this. And not realizing that even a good day is still a bad day, some days, it’s that white noise behind everything. And sometimes I can in the morning, feel fine. But as the day goes on, and I deal with stuff, I do more, it really takes it out of me. And then all of a sudden, I’m down for the rest of the day. And it’s not that I’m picking and choosing the fun activities I want to do versus things that don’t. It literally is it is that some people don’t understand that.
Kat Harrison
I was sitting here nodding furiously, because I think it just goes to show right? Like my illnesses are so different than yours. But literally, that entire thing describes my life on a daily basis in terms of being able to do something at 10am and then by 2pm, I’m horizontal in my bed. But for me, the biggest misconception is definitely the idea that migraine is just a headache. I don’t think a lot of people realize that it’s so many more symptoms than that. I can have cognitive issues, I can have short term memory loss, I lose my vision a lot, sometimes one eye sometimes in both eyes. Nausea is something I battle with very intensely. So yeah, it’s so much more than just a headache.
Heidi Cope
I think for me, something that I’ve definitely experienced with just family, friends, sometimes the community at large is that accepting your diagnosis is not giving up. Because a lot of times, the chronic illness does mean forever with POTS, you can actually go into remission, which can happen but it could come out at any time. It just kind of understanding that me accepting that I live with a certain condition and I am okay with that doesn’t mean that I’m necessarily giving up on treatments giving up on you know, physical therapy to have a better quality of life. I think that people who live with chronic illness do strive for the best quality of life that they can have. And they are willing to put all the effort and all that work into it to make it the best. A lot of times people say, “Oh, if you’re fine with this, that means that you’re not there, you’re giving up but you’re just willing to live at this level of quality life.” But I’m saying right now my quality of life is substantially better than it used to be. I’m super happy with this. Of course, I’ll continue to move more to get better with it, but I’m also okay in the moment as well.
Charles Mickles
I think that’s really interesting that you say that because I’ve had that same experience. And even this idea that a good day, does that mean I’m getting better. And realizing that with these there, there isn’t a getting better. Even my good days bad. And like you said, acceptance doesn’t mean I’m casual about it, or I’ve just given up. It just means I’ve come to terms with this is the way my life is gonna be.
Ashley Kristoff
Yeah, I do want to take in a little bit to that. Like what is a good day with chronic illness. So someone on the site wrote, “On the few occasions I leave my home, I do try to look nice if I run into someone who knew me before I was diagnosed, I always get, ‘you look great. You must be so much better now.’ I don’t try to explain anymore, I just thank them for the compliment and tell them it’s a good day. It’s frustrating. I look like death at home when I’m sick. So when I’m having a good day, I want to actually look human again.” But I feel like that person is thinking she doesn’t look sick to just stay home. Like lose, lose, just stay home. So I really want to dig into that a little bit. This idea of like what does a good day mean to you? What does it look like?
Kat Harrison
Oh, I love that question. Because I faced the same thing, the just that I think we all assume we all touched on it though, like you look good today, you must be healed. For me, a good day means I was able to take a shower and not pay any repercussions because of it, that I’m able to go to all my meetings or if it’s the weekend that I’m able to actually roll out my yoga mat, or be able to do errands. Not all in the same day, but if I can do things other than actually manage my condition, that’s a very good day for me.
Heidi Cope
I think for me, a good day with chronic illness is a day where I get to have choices. Because a lot of times in the past when I was first diagnosed I had no choices My life was waking up during my therapy is going to physical therapy resting and repeat for about a good three to four months. And still that that still happens every day. That kind of baseline maintenance still happens. But having the ability to do something beyond that, and having the choice to do that, or having the choice to do something that I know will flare me up yet, I will be able to recover from the next day and still be able to participate at work or still be able to something else is really important for me. And I think that for me, that’s what signifies a good day and a bad day. It’s just getting through the basics and not really having a choice and what I want to do because I am kind of struggling just to do the basics.
Charles Mickles
You know, for me, I think the hardest thing is that some days you would look at me and you don’t even know that I have a chronic illness. It is frustrating some days not knowing what you can and can’t do. So I’ve even had people you know, different from the good days and bad day for me is often how just look. And so yeah, I’ve had people tell me, I looked like I was dying some days, which is always such an encouraging thing to hear from somebody. And then the other days where they said look fine, like you said, I must be doing better. Even bad is the day that I’ve got pain, I feel good. It’s almost like this white noise. It’s always there. Even on a good day, it’s still a bad day, but most people’s standards and how I feel and what I deal with are engaging the activities I’m doing, how much am I willing to pay for later on?
Ashley Kristoff
I feel that that sentence in my soul Charles. It’s like, how much am I willing to pay for later on? I’ve had a conversation earlier this week because I had my anniversary yesterday’s we’re celebrating on Sunday. So I’m like, okay, that means Saturday is a do-nothing lay at home, maybe do a puzzle, probably play Animal Crossing. But that’s what I have to do all of Saturday because I know that I’m going to be out for a couple of hours on Sunday. And so my trade-off is I just can’t do anything Saturday to make sure I have the energy.
Charles Mickles
Yeah, it’s almost like it’s a pick and choose possibly, if I do this, no, I’m not going to be able to do this. Or if I do this, and I’m gonna have to sacrifice this you with that. You know, I always struggle with feeling and let somebody down. Because if I chose this and it means I couldn’t do this always something that was getting left out, even if the people were understanding is still something that I struggle with, personally.
Kat Harrison
Yes, I totally relate to that. Charles, it’s something that I call the chronic illness energy exchange, that if I do something productive, or I run an errand, then I have to sacrifice something else. So if I take a shower in the morning, that I may have to sacrifice seeing a friend in the afternoon, if I cook a meal, I may have to sacrifice, maybe having to sleep one extra hour. So I regained that, that energy, it’s like this constant balance mixed with guilt, that makes it very difficult to be chronically ill, i have air
Heidi Cope
Me living at base level POTS, it does affect me every day, I have a very structured routine that helps manage that. But I don’t consider myself “sick” I have air quotes going up right now, during that time because that’s just part of my life. It’s just how I am. And I don’t even notice really at this point that I’m living any differently because I already structure my life to accommodate for that. And it only really gets noticed by me if I flare-up. And in that sense, when I’m flaring, that’s when I consider myself to be sick. And so for me, I’m like, okay, so that is sick. That’s when I’m like, oh, that’s when this is happening, but to others, they aren’t seeing that they still see that base level as maybe like something different than I do who don’t live with a chronic illness. And that’s when it gets a little bit confusing. I don’t have to explain my life when I’m not in a flare-up. Because it’s not obvious POTS is very invisible. And when I am in a flare-up, it is visible. But that is just something that I struggle with a lot those differences there.
Charles Mickles
I think that’s interesting you said that, have you ever had the experience where when someone asks you how you’re doing? Or they say, oh, you look like you’re in pain today. And you almost stop and go? Oh, yeah, I guess I am. Because it’s kind of become such a white noise and something you deal with daily unless it’s really excruciating, or really over the top. It’s almost like you’ve learned to live with it for so long, that it’s something you don’t even realize notice until someone else points it out. And if they’re pointing it out, it’s one of those days where I’m feeling really, really, really bad. And it’s evident.
Heidi Cope
Yeah, exactly. I don’t know Kat, do you feel like this is something that you struggled with? How people notice it on you?
Kat Harrison
Yes, totally. This is actually something I talk about with my partner a lot. He is able to tell when I’m having a really, really bad day, which I actually really appreciate because I don’t have to verbalize as much how I’m feeling. But it’s really difficult. I think when you live with a chronic illness that no one can see. Like I look at, you know, pictures of myself from the past and like I can’t in my mind, I know how I was feeling at the time, but you can’t tell how I was feeling which is why I think it’s so hard for other people to truly understand what people with chronic illness are living with.
Heidi Cope
I think like looking back at pictures this definitely comes to light on how you feel. I remember this one time over Christmas, my Dad said you looked really bad in these photos. Like Thank you Dad, maybe like I don’t know if that’s something like is affirming that that’s what I feel. Because a lot of times people don’t realize that and maybe that is a good thing that someone actually noticed this. But sometimes I honestly kind of prefer people not noticing. So I don’t want that to be the biggest part about me that people see.
Charles Mickles
Yeah, it’s sometimes definitely a big part of my life. But I wrote an article a few weeks ago about what I wish people would ask me for talking about sometimes that has nothing to do with my chronic illness because it is a big part. But there’s so much more to our life than just that. I’m not Parkinson’s, I’m not arthritis. I’m a lot of other things, too.
Ashley Kristoff
Absolutely. One of the misconceptions that you touched on earlier, Charles, that I want to jump into, is the age misconception. So one of the quotes we got from our community was “I’m too young 24 to have multiple chronic illnesses.” And I think, I mean, I can talk to my experience, this isn’t quite chronic illness, but I was diagnosed with cancer at 20. And so I developed a chronic illness at 20. Because that’s when I got my thyroid taken out. And that’s what made me have hypothyroidism. That was the constant thing I heard was, you’re too young to have this, you probably shouldn’t have this at your age. And I’m like, well, I do. And then that also was echoed in the support that I was trying to find, before I learned about The Mighty, I was just searching for thyroidectomy, or thyroid cancer survivor support groups, and I couldn’t find anything that was a good fit, because the overwhelming majority of people who have that same experience as me, are like women in their, like 40s, or 50s up. So they’re talking about certain side effects and symptoms and things in their day-to-day life, which didn’t also apply to me. And I struggled at my age to like find information that was actually really relevant to me and the way I was experiencing it. So love to know about all of your guys’ different experiences with, with your age, how that impacted maybe your diagnosis, or maybe the perception.
Charles Mickles
You know, for me, that was a huge, huge thing. Because the age of 15, I had rheumatoid arthritis by 19, I’ve had my first hip replacement, it was at the time frustrating, but it’s now kind of humorous. At 34, I was having my second hip replacement, and they made me go to joint replacement class. And so we’re all sitting around the table. And as the only patient sit around the table, and each time they’d say that they look directly at me, because I was about 30 years younger than everybody at the table. And then when they finally got around to discussing it, they said, How many of you have ever had a joint replacement done before and I and a lady in a wheelchair who was about 85 were the only two people to raise their hands. And the lady looked at me and said, “I think you mistake what I’m saying. I don’t mean you know, somebody that has, we have a family, you yourself have had a joint replacement.” And I kept my hand up. I said Yes, ma’am. And she looked at me and said you must be mistaken, kept moving on. And it was this it just punctuated how the time I was even when I got my Parkinson’s diagnosis. It took us four years and four different neurologists, to finally find the answer. And two of them looked at me and said, You’re too young, deaf, Parkinson’s, and didn’t even give it a second thought. And so for me, it was always one of those terrifying things I heard from people is oh, you think you feel bad. Now wait till you’re 60 if I feel this bad now, Heaven help me when I get to be 60 is that idea of, of just not knowing what it was gonna be like when I got older if this is what I was already battling and dealing with.
Kat Harrison
So this is actually a question and a misconception that I’m super passionate about. So I posed the question is, what age is a good age to have a condition? I always get the you’re too young to have this. And my retort after having, you know, living with something for so many years is but what is a good age? Because I think what happens when people say that, it creates a domino effect of all the emotion of the person living through it. So not only am I dealing with this idea that like I live in pain, I live with chronic illness, but then I’m adding in this idea of like, maybe I’m too young to have this is there something wrong with me? Why am I not strong enough? Like people my age. I was diagnosed at the age of 15 with most of my diagnoses, so I’ve lived more of my life sick than I have not, does that mean there’s something wrong with me? So I think the age condition intersection is super important. So I’m glad you brought that up.
Heidi Cope
I think for me, the age thing really makes misdiagnosis or the gender and age misconceptions that happen around chronic illness really make getting a diagnosis for dysautonomia, or our parts really difficult because most people end up start experiencing symptoms like late teen years, early 20s. I was diagnosed around 23, on my birthday, there’s that Happy Birthday here’s a chronic illness, but for me it was difficult because of that kind of ageism and sexism related to that a lot of people miss diagnose POTS with anxiety. so it often takes many years to get a diagnosis with pots because the symptoms are very similar. You get the dizziness, the heart racing, then I always question well, why is it only happening when I’m standing up so Am I getting anxious just standing, that makes no sense. And for me, the interesting thing is that oftentimes it takes so many years to get to a cardiologist. And for me, the interesting part of this was that I ended up getting to a cardiologist through a psychologist because they thought, oh, you must be missing home, like you’re so far away, because this happened when I was studying abroad. I said, oh, you know, I’m fine, but sure, I’ll go to a psychologist, let’s see what they think so that we can move on with our lives and get something else going on. And they said, you know, you’re right. This is something else. And kind of this advocating piece really helped with the diagnosis part with the age misconception, because they kept thinking that it was anxiety. And really, it wasn’t, I don’t see how anxiety can make someone’s heart rate jump over 100 beats per minute within seconds on standing. And that was something that is often clashing when people are trying to get a diagnosis for POTS specifically.
Ashley Kristoff
Yeah, I think that’s a really good point. Somebody in our community actually wrote in when we were asking about misconceptions, their quote is, “oh, you’re just anxious.” So that I think is very relatable in the experiences with getting that diagnosis, as a lot of people misconceive it as anxiety for some reason, even though we know our bodies, and we know that’s not the case. So just want to echo that here.
Charles Mickles
Oh, I got told I was just depressed. That was my Parkinson’s symptoms. is that it was just depression, I remember thinking really, really, really Doc? This, this is the best we got?
Heidi Cope
I think it’s important to note here, though, that because of this constant battle in getting the original diagnosis, that it’s often psychiatric, I think it turns away a lot of people from the chronic illness community from actually seeking psychiatric help later. And for me, I knew like okay, I have anxiety. I know what this feels like. I know it POTS feels like they’re very different things. So I was very pro- like, I need somebody to talk to I need some help in anxiety and PTSD. And for me, I was able to find that help. But I feel like a lot of people wait very long are resistant to seeking psychiatric help after diagnosis just because of that. It makes sense, they had such a negative experience beforehand, trying to find a diagnosis, but later, it’s difficult to then seek help in that area. Because they’ve already had so many negative experiences they’re in trying to find their original diagnosis.
Ashley Kristoff
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All right, so now that we have covered, I mean, we’ve we can never get through the list of misconceptions I know. But we’ve covered a lot of the really big ones a lot of the ones that we encounter more often. So now I want to kind of talk about kind of the other side of this misconception. So more helpful, more tangible information. I guess my first question is, What do you wish people understood about chronic illness that they don’t know? Or don’t seem to in your experience?
Charles Mickles
I think for me, the biggest thing is that it’s not something that’s ever going to end. I’m not the only one in this fight. You know, I tell them, I tell people all the time on the poster child for a family, but I’ve got kids and I’ve got a wife, that bear this just as much as I do. And they carry a different kind of burden and the things that they have to do. You know, the things that my children have missed out on because dad couldn’t do them because of his health, or the considerations my wife has had to do some planning that normally she wouldn’t have to do. And in a way, it’s part of our family. It’s always with us. We don’t ever get a vacation from it. Even the good days are still there. And so that I think that for me is the biggest thing is it’s not just my fight. It’s our fight that we’re walking through.
Kat Harrison
That’s a very beautiful sentiment that like you know, everyone’s in it together. And it can be hard, right if you don’t have that support system as well. So that’s kind of the flip side. For me. I think like I wish people understood that, like, I’m trying to live the fullest life that I can. And that like, I want to do a lot of things. Sometimes I get the question because work really drains me, right? It’s very like, work full time. And that’s like where most of my energy goes. And I think I wish people understood people sometimes say to me, well, why don’t you not work? Aside from the financial, so you have more energy to do other things. And I constantly have to say like, this is partially fulfilling to me, like, this is what I like doing. And I want to accomplish other goals. I don’t want to sit trapped in a pile of my own pain. So I think that’s, that’s something I would want people to know for sure.
Heidi Cope
I think for me, it’s this concept of strength. And I think sometimes in terms of what you wish people understood or knew, it’s also what I wish people could understand and, and support. Um because in that support, just saying, oh, but you’re the strongest person I know. Or if anybody can do it, you can, or just wait to feel better soon. And all of those things, although it sounds helpful, it really isn’t sometimes, because the truth is, is that we are all strong because we have to be. if you weren’t “strong” then maybe you wouldn’t be as far along on this journey, or maybe, who knows where you would be, but everybody possesses the strength, and everybody has the capacity to heal and live in this type of world. And it’s not just that only the strong people happen to live with chronic illness, which is pretty funny to me. And that sometimes, like we do feel weak, sometimes I do feel weak. And that’s okay. And just stating that. And not always having to be putting on a positive, I think is important, because I think that people always share all these positives happening. But sometimes it just sucks, and just saying, You know what? I see you, it sucks right now. I may not see it, because like visibly, but I’m here for you. And that’s what I wish people could just understand is that that strength is just there out of necessity. And sometimes people need to support in ways that it’s just acknowledging that weakness is not a bad thing, or that sometimes struggling is not a bad thing, either. It’s just a state of being.
Charles Mickles
I just recently retired from education. And it was something I love doing. But it reached a point where I just couldn’t keep the pace anymore. And realizing that the chronic illness affects those decisions. And, you know, it’d be yeah, be real simple just to say, yeah, I just saw I will work. But I’ve got family support, and I’ve got, and you I don’t want, like you said, just sit and do nothing. And then that idea, Heidi, that you said about being strong because we have to be Yeah, that’s very true. We kind of weren’t given a choice. And, but there are a lot of days where you just say it sucks. I can’t. I can’t do this. And being able to have some people around you that understand that when you say that, or when I say I just I’m so tired of fighting, I don’t think I can fight anymore. It doesn’t mean I’ve given up. It doesn’t mean that you anything beyond just the fact that it’s just a hard day. And they’re not trying to cheer me up. But they just, they look at me and say, yeah, I know, it’s such, and being okay with where I am with that.
Ashley Kristoff
Yeah, I just wanted to comment on that to talking about how timing works. I literally had that conversation with my partner yesterday, after getting that diagnosis, I had a really bad night because it was a new thing to process. And we literally had that exact exchange of like, he’s like, you know, you are strong enough to get through this and like, maybe have it I feel very weak today, I feel very tired. I’m exhausted. I don’t want to do this anymore. And that’s just like a reality of day-to-day. And I mean, a new diagnosis is its own separate set of things too. But like I’ve had those days prior to getting this diagnosis as well, where it’s just like I like today, I just want to give up today, I don’t want to try today, I don’t want to do all the things that will make me feel better, or I just like can’t because it is a lot. It is like you said, Heidi, you have a routine that you do every day that helps you, you know, be the best that you can be. But there are some days that like I do that too. But there are some times I can’t even do that because sometimes that’s too much.
Charles Mickles
Well, and you what you said about getting another diagnosis. I remember, two years ago when I got hurt, I had Parkinson’s after we all we had already walked through. I remember I couldn’t talk. I say to my wife is that life sucks, but it’s getting really full. And I just I sat on the edge of the bed and just said I don’t think I’d do this anymore, babe. I’m just very tired of the fight and choking back the tears. And that was all I could say. Because again, it was just one more thing. And I just I’d hit that point where I was like I can’t I don’t know if I can do this. But realize I didn’t have a choice and I had to.
Kat Harrison
I think the theme I’m noticing and I think that that’s also one misconception I really wanted to bring up is that people believe chronic illness doesn’t affect your mental health. And that I would say, you couldn’t be any more wrong. My mental health has actually struggled, I would say that my chronic illness is the main reason why I struggle mentally, it constantly feels like something that’s pushing back to me. And a lot of times, I feel like I’m not coping very well, mentally, even though I’m decades into this process. It’s like, he especially like, I feel like I’m really struggling this week in particular, and I’ve been having those days where I’m waking up, and I’m like, I’m done, I’m good. Like, this is really difficult. So to everyone listening that doesn’t know this, the body and mind are intrinsically connected, you can’t actually separate them. So to anyone with a chronic illness, who says I’m struggling mentally here that except that understand that that’s very real, and also a very normalized experience for people that are chronically ill.
Charles Mickles
Yeah, I actually had a person we were discussing it. And they looked at me and they said, well, your struggle is physical, it’s not mental. And I just, I didn’t even know what to say, to that person. Because anybody that spent time around me or knew me, like you said, knew was very much and it does, it does affect you mentally, it does affect you emotionally. And I think to deny that is to deny a huge part of what you face every day. And I think, you know, unfortunately, in society, mental health is not something that’s still very, very positive, in terms of when people speak about it. And there’s a lot of misinformation. And there’s a lot of people that kind of look down on people who struggle with that and wrongly so, because it does affect so many and so many things. And when you’re battling chronic illness, that is going to be a huge part of it. And that’s okay. It’s okay to have those days where you’re not okay.
Heidi Cope
I think there’s also a difference in like, if you live with a chronic illness, you probably are in one of two camps. One is that you deal with a condition that has symptoms every single day. It’s unrelenting. And the other is relapsing-remitting, which is maybe you have a baseline level of symptoms every day, but you could be feeling great for weeks, then suddenly, it’s completely topsy turvy. And you’re back to square one. Two years ago, I had one of my worst flares, I just went for a simple walk around my neighborhood, it was two-minute walk, and it just flared up. And from there, I was back to what I would say is square one restarting cardiac rehab, retrial and new medications, all these things that took about four months to get out of. And I think that that takes a toll mentally because you think you’ve reached this level of your new spaces. And yet, you can still have the potential to go back to the beginning, it doesn’t mean that you won’t be able to get back up to where you were before. But that constant, up and down and unpredictability of what you’re experiencing can be mentally very draining because you think, Oh, I’m doing great right now. Maybe I can go see my grandma next week and I can work out with her the garden, that’s great. But then that just suddenly turned like, okay, now, like, I’m not able to do anything right now. And that’s just kind of, I think, just difficult and affects mental health a lot as well.
Ashley Kristoff
And I think to your earlier point, Heidi, you talked about how acceptance is not giving up. And I think that is so so important. Here, it’s like getting to the point of acceptance, when you live with a chronic illness can be really, really hard because of the fact that it is so unpredictable, it’s really hard to like, accept what your new normal looks like, because your new normal looks much much different than it probably did pre-chronic illness just because of the nature of these illnesses. And so I think that’s, that’s a very important thing is you need to be able to get to a point in acceptance with chronic illness because that’s the only way that you’re going to be able to maintain your physical and mental health through it as best you possibly can. And it’s really, really hard to get to that point. I don’t want to diminish the fact that getting acceptance is easy. It’s not, it’s really, really difficult. Because it’s a, like you said, it’s a trauma, it’s a huge traumatic life change. And it takes a while to get there.
Charles Mickles
And sometimes Ashley, it’s even back and forth. You know there are days where it’s much easier for me to accept than others. And I think you’re whether you’re talking about somebody even like what’s going to cause a flare, I did this this week, and I was fine. And the next week I did it and I ended up in bed for a couple of days. And you know I think, I think for me, it’s just almost a daily choice of acceptance. I said some days it’s easier. I found the days it’s harder for me or the days when I’m in a lot of pain, or the days received affecting those around me. And those are the hardest days for me to accept because I feel like they’ve been given a life sentence that they didn’t sign up for and it can make it challenging and it’s something that’s not a one and done kind of accepted now, I’m good for the rest of my life. It’s something I’ve come to terms with on different levels every day.
Ashley Kristoff
Absolutely. I think the main advice I’d actually give my past self, which is really, really important. Now, it’s like, I wish that somebody had told me to take care of my mental health when I was going through everything with my physical health, because I have definitely dealt with the consequences of not processing that trauma, not processing that change in that life thing in the time. And because of that, I’m still really working to get myself out of that place. So, you know, I’m taking my own advice now on already seeing a therapist. So I’m going to make sure I bring this up, make sure that I’m talking about it, at least with this one person, even if I don’t talk about it with anyone else, because I know that this is going to have an impact on my mental health. Now I’m trying to get ahead of it, because I have that experience in my back pocket. So I want to just touch on one more thing here, which is really talking about we can do our best to educate people without chronic illness, what it’s like we can explain misconceptions to them and why they’re misconceptions. But I would love to know if you have a good way in which you handle conversations like that in which it comes up, they say, oh, you’re probably just having anxiety. If you just you know, ate better and worked out more, you’d probably feel better. How do you navigate conversations like that, because I know it can be very invalidating to hear things like that can also sound like the person doesn’t really care because they’re not listening to you. So just something, something that’s worked for you or something that you try to do when those situations arise.
Kat Harrison
For me, one thing I try and do, if I’m explaining my illness, and it’s really being misunderstood, is I try and explain it in a way that’s not at all connected to my symptoms. So I’ll say things like migraine, for me feels like not being able to say a complete sentence, or migraine, for me feels like getting 12 hours of sleep and not feeling rested. And I find that putting it in terms like that are experiences that a lot more people can relate to, right? Like other people can relate to, you know, you think of like new parents, or someone who’s grieving this idea that like you can sleep as much as you want. But when you wake up, you don’t feel rested. And I find that if I separate out the day-to-day struggle, like from the actual symptoms, I have found a lot of success with that, actually.
Charles Mickles
Yeah, I’ve tried to do that, as well as just trying to connect it with what people’s experiences are. But then also, just really being honest with where I am, even in my writing and things like that, that I’ve done, I just tried to drop all pretense and say that, you know, when it’s a bad day, we’re gonna write about how bad the day is, we’re going to talk about that. And also realizing that a lot of people come to the table, sometimes when people are dealing with struggles where we want to fix, and we want to help them there’s not anything that somebody can say that’s going to make my Parkinson’s or my arthritis go away, or make it better. But I realized that many times, it’s a lot of care and concern for me, that they’re hoping to give me something that helps. And it’s from the best of intentions. And I’ll try to remember that, even if it’s something I’ve heard 50 times about, you know, what I need to do is is that they feel as helpless as I do some days to deal with this, and is their way of trying to care and tried to help. But then helping them understand what that feels like every day. And this is not like Kat said, it’s not just a headache. It’s not just I’m tired that day or I didn’t sleep. It’s lifelong and so much more complicated than those things.
Heidi Cope
I would definitely have to agree with Charles on that. Because I often find that this resistance to and misconceptions about what I’m living with comes from the people who are closer to me, family and friends who’ve known me from before. And I kind of think that first, it made me very frustrated, I think that it made me not believe that they cared about me at all, or that they just didn’t want to understand. But I think it’s more of what Charles was saying in the sense that they feel helpless as well. And they want something to be better. And accepting that acceptance comes from both parties. When you live with a chronic illness. It comes from the person living with the illness, and it comes from the people as well who are caretakers for or know the person or love the person who lives with the illness. And I think that for me that those two paths to acceptance have different speeds. And for me, mine has had mine has come to this level of acceptance, which, as Charles was saying earlier, it does change some days, like I do not accept this at all. Just kidding. I don’t I’m back to square one, not a fan. But usually, it’s like, okay, I accept this is where I’m at, this is why I’m gonna be doing and I am still on the path forward. But they are not there yet. And it gets really difficult. And for me, I think that trying to convince them otherwise is kind of a waste of my time, versus I think that all they need is time. They need time to better understand what’s going on. And they have the internet. I know they’ve googled and I know that they’ve read I have a blog that I write about. They’ve sure they’ve read that but I just think it’s the acceptance part, which is not there yet. And that just takes time.
Kat Harrison
Yeah, Heidi. I think it’s talked about enough like parallel grief journeys. The person who is grieving themselves and then the person who’s grieving someone else. And I think you’re right. Like, you have to acknowledge that journey as well, because it is really about both coming together. And as much as I’m frustrated, my partner, for instance, has his days where he’s in denial, or he’s really angry that you know, the ways we’ve had to compromise our life. And that’s valid, too. You know he is human. And he loves me. And that’s very hard to watch someone you love go through tough things. So I’m glad you brought that up.
Ashley Kristoff
Absolutely. All right. So hopefully, this was really helpful. For anyone who’s listening, I do an end on a slightly more fun note talking about, this is usually where we do our Self-Care Corner. Instead, we’re going to do Health Hacks today. So I will explain this a little bit. I’m going to give you guys a prompt, and I will answer the prompt first, so you have a minute to think about it. But the first disclaimer I do want to put here is that we’re going to be talking a little bit about our symptoms, and maybe some treatments are things that we use that help us, this is not a substitute for medical advice, this might be an idea to bring up with your doctor, it might be something you can try. But talk to your doctor about it if it’s something you are interested in, just to make sure it’s a good fit for you. So with that being said, my question for you is, do you have a symptom that you experience with either a tried or true method of like treatment for that symptom that works for you, or like, what’s your go-to, and I was gonna start. So with the hypothyroidism, I have a sensitivity to heat and cold, basically means I can’t control my like my body’s temperature response to outside scenarios, if it’s really hot, I’m going to be really hot, my body won’t cool itself. So my very boring health hack here is I usually dress in layers at all times, or I always have extra layers, both directions, more clothes, less clothes with me at all times, because that’s the only way that I can stay up with that symptom. If I had a personal air conditioner at all times, that would be ideal, but that does not happen. So that is the way that I deal with that symptom is just like I always just have extra clothes all-around at all times. Who has their own health hack to share?
Heidi Cope
Mine kind of goes off yours actually. So whenever I think about symptom management for POTS, I think about safety first, because oftentimes, POTS is associated with people fainting are not a pots fainter, but is something that can happen the most likely place for that to happen is in the shower or exercise. So I’ll just focus on my health hack for the shower. Showers are great pre-POTS, you know, you get that could stand the shower, you can have the hot water all over you. That’s great. 10-15 minutes to de-stress. But with POTS, it’s a very stressful environment, because the heat increases blood pooling, which raises your heart rate. And when you raise your hands above your head, the gravity is making the blood go from your hands down and it also increases your heart rate. So it’s not uncommon for somebody to have a heart rate of like 150 plus trying to shower. So what I do is one, I have a shower chair, I cannot I love it. Even if I don’t experience symptoms some days I still use it because it’s like a glorious experience. Why would you not want one? The other one is a detachable showerhead and a dehumidifier. So together if you’re having a bad day I would say is turn on your dehumidifier, use your shower chair, I washed my hair before I get into the shower. So I bend over my shower, put my head down to the gravity’s pushing blood to my brain instead of somewhere else wash my hair. And then I get into the shower and finish the job. But also if something is really bad, no one does this, is where toeless knee-high compression socks in the shower. If you do that the blood from you know your body is not going to be slowing down must not drop just to your feet. And so you can reduce those dizziness symptoms. And if you get kind of like a thicker level of compression sock, it won’t feel slimy in the shower. It’s totally fine. And it definitely works. So I, it seems weird, but I absolutely love it. And that’s my main hack that I would use.
Ashley Kristoff
I love that just because I would have never thought of that in my entire life. That’s just like a very, very helpful but very fun thing to think about. Alright, Charles or Kat, do you have any health hacks?
Kat Harrison
So mine’s like a little different. So because there are so many of my symptoms that can’t actually be managed, what I find is because I’m in pain, pretty much 24 seven, that really, really affects my ability to clean my house. And I’ve kind of had to give up the notion that like I’ll have one day a week and that will be when I clean my house. So I follow the rule of I never leave a room unless I’m bringing something from that room to another room. So if I left a pen in the bedroom from my desk, when I leave the bedroom, I take the pen and I put it back on my desk. If I’m washing the countertops, and my dryer is right by there, I’ll take the clothes out of the dryer and bring them to my couch. It’s almost like I’m kind of doing mini decluttering as I’m living and that has actually really helped me to like make my house not a tsunami of clutter. That’s my health hack.
Charles Mickles
Yeah, I think for me, I’ve definitely got some outward symptoms like tremors and things like that, that affect my ability to do stuff. But then beyond that, just the mental aspect I just tried to give myself grace and freedom to not do the things that I can’t do. I think so much we put pressure on ourselves to do things, we get frustrated. And that makes a chronic illness. For me even worse, I get frustrated, because I can’t do something that I want to do and learning to stop or, you know, when my tremors are so bad that I can’t get the spoon to my mouth with all the food on it. OK, I’ll switch to finger food, you know, I definitely don’t want to use a straight razor while I’m shaving. So I’ll get the electric razor, I’ll just little things like that. Or if I don’t feel like Kat said with the house. If I can’t do it that day. It’s okay if it doesn’t get done and give myself that freedom to say, just stop putting this pressure on yourself. I think that’s the biggest hack for me, has been mentally dropping this idea that I’ve got to have everything done that some things can’t fall by the wayside. And if they do, it’s OK
Ashley Kristoff
I love that. I think that’s a great way to wrap this up. I just have one final question here for everyone to answer. And that just is what made you feel Mighty this week? I will start. So yesterday, I can talk about that, because I’ve already talked about it a little bit. So I got my diagnosis yesterday, I made the decision to log off of work a little bit early. And then I also made the decision to just be very clear with what I didn’t want from my partner. I didn’t know what I needed, honestly, like I really didn’t, because I was just in such a very emotional place trying to process the news. But I was able to explain to him very clearly what I didn’t want and vocalize that which is something that I have a lot of trouble doing. I have a lot of trouble saying, especially when I’m in a vulnerable place. I’m much more flexible and complacent and just go along with it. But I knew that I knew what I didn’t need yesterday. And I made a point to say that and that’s what made me feel Mighty this week.
Kat Harrison
Well, I feel Mighty because I got through this week, my house didn’t blow up. I didn’t lose any my relationships, I went to work every day didn’t collapse as a human being. And that’s really hard for me a lot at the time. So feeling super good that I made it and that I’m able to record this podcast episode.
Heidi Cope
For me, I have a lot of goals and my goals for treatment, almost all revolve around exercise tolerance. So day one of having POTS, I couldn’t stand, maybe I could walk from my bed to my bathroom. That was about it. And so my huge goal has been I really want to walk a 5k like I really, really, really want to do this. I love exercising, I really want to get to this level. And so I’ve been working on cardiac rehab since 2017. Needless to say, I love physical therapists, I’ll put that out there. But last week, I went to the beach, and it was the perfect POTS weather kind of windy, overcast cold. So that combination, I actually was able to walk 5k and I thought it was going to happen this year, I even signed up for this 5k that donates to Elon’s Pro Bono Physical Therapy Clinic and you do it virtually. And I said I’m going to do it this year. They don’t care if I do it all at once it can take some breaks. And I ended up finishing that with a little bit more. So for me, that was kind of full-circle moment for me, I did all this physical therapy, which I will continue doing for the rest of my life. I love it walked in my goal and then ended up using that to give back to that profession. And so I really enjoyed that. I thought that that was my main highlight of the week. And it made me feel very mighty.
Charles Mickles
Those are those are awesome. You know, for me, I love writing. And so I actually finished a draft of my latest book and just about how do I face tomorrow. And then I was able to use some of those things that I’ve learned to help my daughter that she struggles with a lot of things and help her through some things and just realizing that I’m not done that they still need me and I’m still there and just accomplishing those things and like you said, just make it through another week. So that’s a big one right there.
Ashley Kristoff
Love it to making it through another week. I want to thank Heidi, Kat, Charles, I want to thank all of you for being on this episode today sharing your story sharing your experiences, any final thoughts you guys want to share as we say goodbye?
Charles Mickles
The only thing I would share with anyone is just remember you’re not alone. It’s easy when you’re battling chronic illness to feel like you’re alone and to and to lose hope. But there’s always reason to hope. And you’re not walking this path alone. Even if someone’s not walking your exact path. There are many people that don’t understand what it’s like to have that daily battle.
Ashley Kristoff
Absolutely.
Heidi Cope
I think for me, the final thought that I have is that unpredictability can be a good thing in the sense that we don’t know what next can go wrong. But we also don’t know what else can go right. And in our future that’s not set in stone either. And so I think that there is hope in that in which maybe what we’re experiencing now may not be forever because we can’t always know that. Some conditions there is a very clear path for others, there isn’t a very clear path. And I think that that does provide some hope and that the future may not be what we have right now.
Kat Harrison
I just want to say that if you live with chronic illness, you’re doing so great. It’s really tough, but you’re doing awesome.
Ashley Kristoff
Thank you all again. And thank you for listening to this episode of The Mighty Podcast. If you want to continue this conversation, head over to The Mighty.com or download The Mighty app to become part of our community. Thank you so much to Kat Harrison, Heidi Cope and Charles Mickles for being on today’s episode. Join us on our next episode and Stay Mighty.