Michelle Auerbach

@michelle-auerbach | contributor
Michelle lives in Montreal, Canada. She’s been a type 1 diabetic since she was 12, and also has a rare neuromuscular disease called Stiff Person Syndrome. She is on the Global Ambassador Council for Beyond Type 1. She shares her story and loves spreading awareness on Instagram @ehmichelle and on her blog www.lovelightandinsulin.ca    
Community Voices

A Love Letter to Anyone Who’s Struggling Today

Hey struggling soul.

I want to tell you a secret.

You are so much stronger than you think you are. Do you remember the

last day that you felt this way? When you felt like you couldn’t take

this anymore, or that you were just so tired of living life like this?

You made it through that day. And  there’s proof that you can make it

through this day too.

Whether you’re fighting your

body, or your mind… or maybe both, you woke up this morning. Though

you may not have a choice and these circumstances have chosen you, you

are facing them head on. And you might feel like they’re overwhelming

you, or like you’re not strong enough to handle them. But you will look

back on days like this and be so proud of the way you surprised

yourself. Just like you’ve surprised yourself before. Again and again.

It’s

not fair that that life has dealt you this deal. It’s not. There’s

nothing that makes it okay. But I hope you know you deserve to be proud.

Because you go through things that other people couldn’t handle. You

don’t even realize all the little achievements you’ve attained. Every

single day, from getting up, to forcing yourself to bathe or shower, to

pushing through the pain, and fighting for your life.

And

though some days you might feel like you’re losing, the mere fact that

you are pushing through is a little win. You are braver than you think.

More of a fighter than you think. More fearless than you think. And no

one knows. It’s a pretty silent battle. No one knows the little things

you overcome in one day. 24 hours. Maybe today you felt pain all over

your body. But you still made it through. Maybe today your mind was a

mess. But you still made it through. Maybe today you were just tired.

Exhausted. You felt like you had the life sucked out of you. But still,

here you are, another day that YOU won over what’s trying to take over.

Please

don’t underestimate yourself. It might feel like the score is 0 for

you, and 1 for life, but you are so much more than you think you are.

You have power over the pain the world has caused you. And you deserve

every single ounce of that power, because you fought for it. And you

continue to fight for it every single day.

So in case no one has told you lately…. I’m proud of you.

1 person is talking about this

Why Separating Your Illness and Your Identity Can Be So Hard

I was listening to a podcast where I was asked the question, “Is there a ‘who you were pre-illness,’ to a ‘who you are now’? Have your interests changed? Do you still want the same things in life?” My answer was easy. No, I am not who I am pre-illness. No, I no longer want to be a fashion photographer. If I miraculously healed, I wouldn’t go back to school for the same program. I no longer have the same friends. The people closest to me are not the same people as they were. And that’s OK. It’s funny, because when you have a debilitating chronic illness, your life kind of comes to a stand still. But then you look back, and even though not much has changed over the years, there has definitely been a change in the person you are. Friends get slowly lost when you become ill, especially with a mystery illness. And I no longer feel any resentment toward that. It’s understandable. You stop being able to do the fun things you were once able to do together, and what you’re going through is so foreign to old friends that they don’t necessarily know how to fit into this life of yours that has changed. That doesn’t make it less painful, but over time you begin to gain a different perspective. I used to be super passionate about becoming a fashion photographer. My love of photography started in high school, and for years I did photo shoots with my friends, even doing photography for some small businesses. I started school for professional photography in college, and it was after the first semester that my illness hit. I look back now, and I know that if I were to get better, I wouldn’t return to that program. Through these years of illness, I’ve learned that I have other passions. I never know what will remain a hobby and what will develop into a career, but I definitely know those things have changed. When you’re chronically ill with a life-altering disease, your life starts looking a lot different. Your days become choices, deciding where to spend the energy you have that day. For example, I love makeup, but have seldom been able to do it lately because I’ve chosen not to use all my energy up just getting ready. Days that used to be filled with society’s norms become filled with doctors appointments, procedures, and tests. That beautiful walk in the park on a summer day might not be something in the realm of possibilities. So with all that, how can it be easy to maintain your identity? Chronic illness does its best to take away your identity. It makes you slowly forget the things you used to love to do, it slowly robs you of the circle of friends you once had, and it makes you question who you even are anymore. Then I was very into fashion and makeup. I had great friends that I had sleepovers dates with where we’d stay up until late eating snacks and chatting about everything, from TV shows to school to personal matters. I was going to be a fashion photographer. I prided myself on that. Now I see any friends on FaceTime the majority of the time. I’m constantly taking meds to curb symptoms. I can no longer talk to my old friends in that same relatable way. They work or go to school, and that is their life. And as much as I love them and wish it was my life too, it’s not. I’m happy to say I haven’t lost my love for fashion and makeup. I’m even considering getting back into photography as a hobby. However, I’ve discovered my true passions; writing and advocating for invisible illnesses. Trying to help people who are on a similar path that I walked. Diving into the type 1 diabetes community. So in a way, my illness became incorporated into my identity. My passions changed because the things I felt strongly toward changed. And that’s bound to happen. As years go on with a chronic illness, and you learn more and more about disability, you find yourself interested in different things. Regardless of chronic illness, actually, the mind and soul are always growing and learning. It’s never-ending. All in all, I think it’s OK to not maintain your identity after becoming chronically ill. I think your identity might have changed anyway, but any major life event can have an effect on who you are as a person, and chronic illness certainly is a major life event. But there can come a point where you no longer recognize yourself. You know longer know who you are apart from your illness. Try to remember who you are. You have an illness, but you are not an illness. You are a person with a favorite color, and a song that makes you smile every time you listen to it. You know what kind of day is your perfect weather. You have a favorite food that makes your lips water. You have more of an identity than you might think you do. Reach for it.

Ways to Handle Receiving Bad News About Your Health

Those with complex chronic illness know that after being tossed around the medical system, we sometimes can end up traumatized. Appointments become scary things. We worry about the outcome. We worry about whether our doctor will be able to help or not. We worry our doctor will give up on us. And sometimes, our fears turn into reality. Today, I was refused a treatment I’ve been getting that allowed me to walk normally again. Horrified? Devastated? Shocked? There is no perfect word to describe my reaction to this event in my life. I had been given a part of my life back with this treatment, and it was now being taken away. Unfortunately, with more people experiencing the downfalls of our medical system and care, appointments gone wrong is a common event. Life with a rare, chronic illness really is a rollercoaster, from being shuffled around to different specialists, offered different medications and dealing with awful side effects, to progression of disease. I tend to be a very emotional person. When something goes so wrong, I get extremely upset. So although I can’t follow through all the time, I’ve found some ways to cope with bad news or a bad appointment. 1. Make a plan to move forward. Starting to think of what actions I can take next to remedy whatever has gone wrong is the biggest and most effective coping mechanism for me. Do I need to see a different doctor? Do I need to take a different approach? What is the next step? Having that plan and thinking of possible next steps has a calming effect on me. 2. Lean on your support system. Whether that be at home or online, don’t keep the difficult aspects of being ill to yourself. Think about who in your circle would most closely understand what is happening to you. If they are someone you feel comfortable talking to, they will usually be more than willing to listen and be your shoulder to lean on. Because more often than not, you can’t do this alone. Here’s a quote that really drives this point home: “You are not a burden. You have a burden, which by definition is too heavy to carry on your own.” 3. Prepare a list of things that make you feel good and keep it with you. Whether it be taking a hot bath, some good old retail therapy, eating some ice cream, or binge watching your favorite show, allow yourself to do these things while you heal. Follow this journey on Love, Light and Insulin

My Oath to Nurses

I promise I will never forget how hard you work for hours on end, without a complaint. I promise I will never forget how thankful I am when you advocate for me while I’m stuck in a hospital bed. I promise I will always remember that even though you’ve witnessed some of the hardest things, you keep doing your job with grace. I promise to try and be patient and understanding if you can’t help me right away. You are overworked and underpaid. I promise I will appreciate every single warm blanket you give me. I promise I will never take for granted the little things you do to make me feel more comfortable. I promise I will never forgot the hard nights I had when you wereable to spend time in my room talking to me and letting me vent to you. I promise I will always treat you with respect. I’m sure you deal with enoughungrateful patients who mistreat you on a weekly basis. I will always say thank you. I promise I will remember all the times you made me smile or laugh while it was hard for me to do so. I promise I will never forget the times you stand up for me. You’re the onewho sees me most and gets to know me best. When you see somethinggoing wrong and step in and help, you make me feel like I’m not alone. I promise to remember that you’re human too, and can have bad days. I promise to always appreciate the less glamorous things you do as partof your job, and I thank you for making me feel comfortable as you dothem. I promise to be thankful when you come check up on me, even though I know you’re swamped with work and running around. I promise I will never forget the years of hard work and commitment you dedicated to getting your degree. I promise you will always remain heroes in my heart because of your hardwork and dedication to making your patients feel comfortable –despiteincredibly long hours. It doesn’t go unnoticed. I promise to shout out into the world the truth about nurses and their importance. I promise to never forget that nurses are a special breed of human like no other. Follow this journey on Love, Light and Insulin

Why It's OK to Confront Doctors Who Don't Treat You Well

About two month ago I wrote a story about gaslighting by doctors. My diagnosis had finally been confirmed and I was ready to write about the painful experience I went through during March or February of this past year. To sum it up as quickly as possible, a doctor walking around with a big ego came in with a large group of students, told me no neurological condition could cause the way I walk, and made fun of me in front of them… laughter included. This was obviously a bit of a traumatizing situation, as when you’re hospitalized you’re completely vulnerable. In my article I wrote that one day I wanted to confront him and let him know the things he said weren’t OK. And on this day, things came full circle. Between his clinic appointments, I confronted the doctor who made me feel so small by turning my case into a joke. I’m still a little surprised at myself for having the guts to do this, but I did it. It took him a minute, but he remembered me. I told him that I was now properly diagnosed and being treated at the neurological hospital. I told him that in the future, he probably shouldn’t speak to a patient like that in front of a group of learning students, and how awful that experience was for me. He very briefly apologized and I felt like a weight was lifted. It felt like closure. Later on in the day, I was shocked when I got a phone call and it was him on the other end. He said he was taken aback earlier and didn’t get to say everything he wanted to say. First, he apologized for calling me on my cell phone. He continued on to say how sorry he was and how wrong what happened was. He told me he did me a complete disservice, and that he can’t imagine as a young woman in a hospital bed how much anxiety and stress he must have caused me. He went on to say that if I ever needed anything, not to hesitate to come to him. So many thoughts went through my head. Sheer excitement. He got it. He understood what went wrong, and had no ego about it. I could feel the regret in his voice. I couldn’t believe he took the time to look up my chart, considering I’m not even a patient of his, and call me during his busy day. He was human. And I didn’t know how he’d remember this. I don’t know if he’ll forget about it, or if it will haunt him the rest of his career. Either way, I have a feeling that a young woman with odd symptoms will never be treated like that by him again. That makes confronting him all worth it. I admit that my main goal was closure, which I now have. I can forgive him and thanked him enormously for taking the time to call. But to know that maybe now in cases similar to mine he might think of me and be gentle, kind, and open-minded… that’s the part that makes me feel like it was all worth it. If you have been mistreated by a doctor, you have a right to stand up for yourself. Doctors are only human, and we’re only human. They may feel intimidating, but they cry the same tears we do. They have little things that make them smile the same way we do. They have fears, the same way we do. So next time you feel intimidated by one, the next time they make you feel small, try and remember that you are just as worthy as them. If you are treated badly, it’s OK to say stand up for yourself, even if it’s months and months later. It’s a good feeling, and worth it if they can treat future patients in a better manner. Follow this journey on Love, Light and Insulin We want to hear your story. Become a Mighty contributor here . Getty Images photo via shironosov

Lessons I Learned From Being Diagnosed With a Rare Disease

1. No matter how much medical knowledge you have or think you have, there will always be a disease you’ve never heard of. After six years of illness, I remember be shocked when my doctor told me she thought I had stiff-person syndrome. Because let me tell you, I had done my research over the years. I knew about plenty of rare diseases. But I had definitely never heard of that one. 2. Doctors are human. As much as we like to think they’re some sort of magical database of knowledge, they’re not. And when you have a rare disease, they often have to Google it in front of you. 3. You should probably have a short version of an explanation prepared for when people ask about your disease. Because they will, and sometimes it’s hard to explain. 4. With rare diseases, it is rare to be diagnosed in a timely manner… for obvious reasons. The doctors you’re first seeing might not even know this disease exists. And maybe you’ve even heard, “It’s rare so you probably don’t have it.” 5. You learn to appreciate the people who stick by you. Going for years and years of barely being able to leave the house much, so many friendships can get lost. But those ones who stay, those are the keepers. 6. Compassion. You learn compassion and you gain wisdom. Because you’ve gone through an ordeal. Maybe it was years of doctors not believing you. Maybe it was friends slowly disappearing. Maybe it was your family being unsupportive. Now you have learned to believe in others. You’ve learned good friends are worth more than money can ever buy. You’ve learned you want to be there for others whose families might not bethere for them. Because family isn’t always blood. 7. The importance of advocacy. Our disease are under-researched and underfunded, and that is part of the reason we wait so long for a diagnosis. 8. Communicating with someone who also has your disease is like finding a long lost brother or sister. And the bonds you form will be unbreakable. 9. Sometimes, you learn to be somewhat OK with being an experiment. Your disease is rare, and it might be your doctors first time treating it, so they are learning along with you. They are doing what they can and trying treatments they think will work on you, and while some of those treatments may help, some of them will not. 10. “When you hear hoofbeats, think horses, not zebras.” Well, sometimes it’s a zebra, and sometimes that zebra is you. And you learn to make noise, so other zebras are heard also. Follow this journey on Love, Light and Insulin. We want to hear your story. Become a Mighty contributor here .

When Your Chronic Illnesses Make Your Weight Fluctuate

Editor’s note: If you live with an eating disorder, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “NEDA” to 741-741. One  of my best friends and I have both been through the ringer when it comes to weight. She has chronic intestinal pseudo obstruction, and I have intestinal dysmotility, but we don’t know exactly what parts are involved yet. The point is, we both lost our appetites, generally feel nauseous all the time, she couldn’t hold anything down and we both dropped a significant amount of weight. My weight loss was split into two sections, which I’ll explain in a minute. We were both what some considered “chubby” prior to the weight loss. She’s much taller than me but we were probably around the same size proportionally. During the first section of my weight loss, I was put on medication forattention-deficit disorder, and lost my appetite. At the time, I was at my highest weight ever. With this appetite loss and diversions to certain foods, I lost weight. I was thrilled with my new body that I did nothing to obtain. I had to get rid of all my big baggy clothes and trade them in for new, smaller ones. I maintained that healthy weight for about a year before my gastrointestinal issues seemed to get worse, which is my current situation. Like I said, no appetite, relentless nausea, and abdominal pain. In the last few months, I lost even more weight. Now I’m bordering underweight, and am desperate for help in that department. It could be a mix of my liver issues with my dysmotility, or it could be something else. The weight fluctuations that can come with chronic illness are hard. I had to get a new wardrobe after my first weight loss, and now those don’t fit me anymore. My friend went through the exact same thing. We’ve pretty much been every size of clothing. Because of society’s standards and what we see in Hollywood, people we know who aren’t close to us might make comments: “You look so good! What diet are you using?” “What did you do so I can do it?” “You look phenomenal!” In the meantime, we’re here thinking, “You don’t want to use my diet.” The way I lost this weight was not healthy. It also caused months of pain and struggles that I wouldn’t wish upon anyone. And then we have the opposite end of the spectrum. Gaining weight from chronic illness. This is how I ended up at my highest weight…my sedentary life due to my illness. But others gain for different reasons. Medications, treatments, nothing comes without a side effect, and for a lot of those it’s weight gain. Some illnesses even cause weight gain. This is the part where we get to talking about body appreciation, and learning to love the skin you’re in. How is one supposed to have time to do the mental work it takes to love your body and feel comfortable the way you are, when your body is constantly changing? You finally get used to one weight, and the next thing you know, you’re having to adjust to something else. Learning to love your body at its highest weight can be a tall task. But over time, it’s doable. Learning to love your body at your lowest weight, well…you may not like the circumstances, but you might be pleased with your newfound small body. The problem is that then you get used to it. And as you recover and get the proper medical treatment, or go on a medication that causes weight gain, you can feel every pound that adds on, and it feels weird. Yet again, you have to adjust to your new body, but you just adjusted to your recent one. And this cycle can repeat itself many times. How, in this day and age, are you supposed to love and accept every part of your body at all different weights? It’s yet another challenge we face that isn’t talked about frequently. To my friends with chronic illness going through this…you are not alone. Learning to love your body one way is hard enough with all the pressure from society, but learning to love multiple versions of your body is another challenge in itself. And I am so proud of every one of you chronic illness ladies and gents who are doing your best every day to try to love yourself the way the way you are. And having to do it over, and over again. I’ll end this with a quote: “You don’t have a soul. You are a soul. You have a body.”- C.S. Lewis We want to hear your story. Become a Mighty contributor here . Gettyimage by: javi_indy

When a Doctor Turned My Health Into a Joke

gas·light /ˈɡaslīt/ verb gerund or present participle: gaslighting 1. manipulate (someone) by psychological means into questioning their own sanity. Like most chronic illness fighters, my path to a diagnosis wasn’t an easy one. Actually, it’s more like a never-ending one, as science changes and new “clues” appear. Many us of, especially those with almost whole body involvement, are first looked at as malingerers. Especially when we first come in with a giant list of complaints, yet our tests look totally normal. As a young woman, it took me five to six years to get to this point of diagnosis and treatment, and I’ve experienced too many accounts of gaslighting by doctors to explain. This story is from this year, 2017, and I can’t decide if I’m healed from it emotionally yet. But what I do know, sometimes writing about it helps, so that’s what I’m going to do. My endocrinologist is an amazing woman. We know her well, as she treats my grandmother, my mom, and me, and was actually treating my mom when she was pregnant with me. Thanks to some miracle, I had her on my side the whole time. She told me all the time that she knew something wasn’t right and that she’d do whatever she could to help it get figured out, even if there might not be any treatment. During a hospital admission in March, my endocrinologist pushed for neurology to come see me and re-evaluate. At this point, in their mind I had conversion disorder. After nine days of waiting, I had a neurologist come in to see me. He was young, looked nice, and came in with about eight medical students. He asked me if I was OK with the medical students observing and I told him that was fine. At this moment, this was my lifeline. I was getting no proper medical treatment for any neurological issues, and I had all my eggs in one basket. He did a neurological exam, asked me to walk and proceeded to tell me, “No neurological condition can make you walk like that.” Obviously as someone who doesn’t have a wide gait on purpose, that was a slap in the face and somewhat embarrassing in front of all the medical students. He proceeded to joke about it with them. There’s no doubt he left that room and told them I was crazy. My mom asked, “But why is she so tired all the time?” He responded, “I’d be tired if I walked like that all the time too.” He left with his team of students who had awkward faces saying bye, and I sobbed. I sobbed and I sobbed and I sobbed. I asked my parents to leave the room because I just needed to sob. I felt like I must be crazy. A nurse sent from heaven came in to talk to me eventually. She reassured me that it was going to be OK, and made me feel like I had a friend. (I brought her a gift later that week after being discharged.) So, not only had that doctor been completely and utterly wrong, but he had just taught eight young future doctors that that was the correct way to treat a patient. This story still makes my blood boil, and I cannot wait for the day that I run into him in the hallway and tell him what he missed, a rare disease called stiff-person syndrome, which is now being treated at the neurological hospital. And no doubt will I tell him off as well. I’m really not a confrontational person, but I can still feel the pain from that day. I will tell him that he should never treat a patient like that in front of learning minds again. I will tell him how unprofessional he was. I will tell him that I hope he learns from this. Follow this journey on Love, Light, and Insulin. We want to hear your story. Become a Mighty contributor here .

The Problem With Jimmy Kimmel's Joke About Diabetes on Twitter

Dear Jimmy Kimmel, A couple of days ago you posted a diabetes joke on Twitter. There’s been an uproar within the diabetes online community and everyone has different opinions. Many people with type 1 are furious, while others think we should just take it for what it is: a joke. Thank you for the cookies @KellyRipa – you are sweeter than diabetes #KimmelinBrooklyn pic.twitter.com/fywxdqvMI3— Jimmy Kimmel (@jimmykimmel) October 17, 2017 But this is where I stand: You did the wrong thing. If your average person makes a diabetes joke, yeah, it’ll irk me personally, but I can brush it off. However, you are a different story. You are a huge public figure, and with that comes a large responsibility. Your voice has enormous reach, and it can be used for good, and for bad. People with type 1 diabetes already have to face a number of stigmas and misconceptions. In reality, it’s an autoimmune disease that can be deathly, and I know so many brave children who take needle after needlebecause they have no choice. These kids are growing up in a society where public figures, such as yourself, are making fun of their disease. The disease that takes over their whole life. The disease that can kill them. The disease that keeps their mothers and fathers up every night to make sure they’re alive and OK. So yes, I think the majority of us can brush off a diabetes joke. But when it’s coming from you, it is spreading this stigma like wildfire. It is hurting children with type 1 all around the world who may now have other kids making fun of them in school because they think it’s OK to joke about it. All the people around the world who watch your show and don’t know much about diabetes may now have the perception that it’s always caused by sugar – when you can instead be using your voice to bring awareness to the people all around the world who got diabetes simply because their own immune system attacked their pancreas, and if one of their insulin doses is incorrect, they could die. So please, keep this in mind in the future. I think you’re hilarious and I love your show. I know you have a son who is fighting his own health battles. Please try to learn a little bit more about type 1 diabetes, and with that information, do what you want. But as a viewer of your show and a type 1 diabetic, it was just disappointing to see the joke coming from you. Especially considering you’re the parent of a child with a chronic condition. Follow this journey on Love, Light, and Insulin. We want to hear your story. Become a Mighty contributor here.

How My Chronic Illness Is One of Many Things That Defines Me

This is a topic widely discussed within the chronic illness community. You’ll see people saying everywhere, “Don’t let your illness define you.” You know what? No, my illness doesn’t define me, but it is one of thethings that defines me. Here is a list of other things that define me: My favorite color. My favorite TV show. My favorite animal. The thoughts that go through my mind before I go to sleep. What causes I feel passionate about. What I like to do in my spare time. What kind of characteristics I’m drawn to in a friend. The way I react to specific types of situations. The little things that make me laugh. How introverted or extroverted I am. What situations I tend to shy away from. How I treat strangers. How I treat my friends. My goals and aspirations. What makes me grateful. The people I love. And then there’s the debate: Does my health status go on that list? I’mnot sure it absolutely goes on that list. But I can tell you without a doubt that my chronic illness affects almost every single thing on that list. And yeah, that makes it a big part of me in the end. For example, the things that make me grateful have changed since I became sick. I’m grateful now for things I previously wouldn’t have even known to be grateful for because of my illness. I treat strangers differently now because you never know what they’re going through. I do activities in my spare time that my abilities allow me to do. I feel extremely passionate about raising awareness for these causes I may never have even been aware of had I not gone through this. A very wise woman named Kerri Sparling, who has type 1 diabetes, coined the quote: “Diabetes doesn’t define me, but it helps explain me.” And to me, that’s an incredible way of saying it. I think the phrase “Don’t let your illness define you” should change to “Don’t let your illness be the only thing that defines you.” Because it is inherently a part of us, even if we didn’t choose it. But each and every one of us have other things that explain who we are even better than our illness does. And sometimes I do like to choose to focus on that. We want to hear your story. Become a Mighty contributor here.