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How Other People's Discomfort Affected the Way I View My Chronic Illness

After my type 1 diabetes diagnosis, I noticed a pattern in the way people, particularly in my church, reacted when I talked about it. Of course it isn’t just those people who said these things, but it’s an interesting connection that I noticed.

It was a person from my church who told me not to call my diabetes a disease. It was a person from my church who assured me I could be cured, and that it wasn’t in God’s plan for me to get sick. I still don’t know how I feel about that sentiment. Even without the fact that they were trying to sell me essential oils when they said that, it felt gross to hear.

After spending some time watching and reading content online from disabled people, I learned that these comments from healthy, able-bodied people come from a place of discomfort on their end. While they may not mean it maliciously, it can feel as if they’re pushing aside my feelings and concerns about my own body to make themselves feel better. They don’t want that negativity. But here’s the thing: I’m not being negative when I talk about what my body can’t do. I’m being realistic.

My body cannot produce insulin on its own. Type 1 diabetes is a chronic, autoimmune disease. There is currently no cure for this condition. These are facts. This is not me being a downer, this is me explaining what my condition is and what it means for my life. But people on the outside don’t want to hear about the hard times. No, they want to hear about how you’ve overcome your struggles, not the struggles you’re in the middle of. I find this level of toxic positivity very prevalent in conversations about mental health, and even basic human emotions, as well.

For the better part of my life, I hid all of my feelings because I had been given the idea at a very young age that my emotions, my feelings, were too much. It’s taken years and two wonderful therapists to help me unlearn that, and to internalize the fact that it’s OK to be sad and upset when things make me feel sad and upset.

The symptoms I showed of severe anxiety when I was young went without any concern from the adults in my life. Hindsight is, as they say, 20/20, but looking back it is shocking that no one had any concerns about my behavior. It is not typical for an 11-year-old to cry inconsolably for several hours during a school day when “nothing” seemed to have triggered that reaction. It is not typical for a 7-year-old to be afraid to go to sleep because they are afraid they might have a heart attack during the night. There was no concern shown about these behaviors. It was just, “you need to calm down,” or, “if nothing is wrong why are you crying?” Imagine asking a 7-year-old – any 7-year-old – to explain complex emotions. Maybe some of them can, but I didn’t have the language for it, and no one was exactly clamoring to help me.

The same people who fall silent when I say I’m mentally ill are the same ones who jump to tell me that my chronic illness would be cured if only I did xyz, or that I don’t deserve my illness. Maybe that’s true. Maybe that’s true for my mental health, too. Despite the fact that these statements about my mental and physical health are objectively true, I do not meet their preconceived notions of what those phrases mean.

That discomfort people show me has warped my perspective about my own health–physical and mental. I took my first “mental health day” when I was a freshman in college, and even as I sent my professor the email that I needed to take one, there was something telling me that I should lie and say that I was sick. I didn’t lie, though, and that was a big step for me. I held my breath waiting for a response, and when it finally came, it was pleasantly underwhelming. My professor simply told me that I was going to miss a quiz and that he would see me in class the following week. That was it! It felt so freeing to be honest, even with something like that.

As for my diabetes, I’ve never had any qualms about telling a teacher, professor, friend, or boss that I needed a minute to check my blood sugar or treat a low. I take my physical health much more seriously than my mental health, even at this point in my journey. Why is that? I could make the argument that I’ve experienced urgent low blood sugars and don’t really want to feel like garbage for 15 minutes, or that I don’t want to take the chance of fainting because my blood sugar went too low. However, I’ve also experienced anxiety so intense that the idea of leaving my house sent me into a spiral. I’ve dealt with intrusive thoughts that made me question everything about myself. The discomfort I feel telling anyone, even people who I know will understand, that I’m struggling is enough to make me retreat into myself and suffer in silence.

Within my lifetime, there has been amazing progress in how we in the United States talk about mental health. The internet has been the biggest contribution to this effort, in my opinion. The first people I saw talking about anxiety were on Twitter or YouTube. Today, there are children’s books, YA novels, and more accessible resources to teach everyone that it’s OK to not be OK. In the early 2000s, however, I did not have access to any of that. My parents didn’t, either.

One of my favorite online creators, Elyse Myers on Tiktok, made a video a couple of months back when she was struggling with her mental health. She said in her video that most people are more interested in hearing about mental health problems in the past tense than in hearing about what someone is currently going through. In my experience, both with my mental and physical health, this is absolutely true. It’s much easier to congratulate someone for getting through a hard time than knowing what to do in the moment when that friend or family member is in the middle of it, especially if you yourself don’t struggle with your mental health. I think the same thing goes for physical illnesses. The discomfort I feel whenever I tell the story of my diabetes diagnosis comes from the responses of the people around me.

This is not to say that I never feel any discomfort at all with my condition. In fact, I recently realized that my experience being hospitalized and nearly dying of DKA still affects me. Every time I walk through a hospital – whether to get blood work done or visit someone – my brain sounds an alarm. I was recently at an appointment with my endocrinologist, and in the waiting room were two EMTs with a woman who had been transported to the office from a local assisted living facility on a stretcher. Hearing them talk to her, asking if she knew where she was or where they had picked her up from, brought me back to the day I woke up in the PICU with a doctor hovering over me asking if I knew where I was. Panic was building up in my chest so quickly, I had to force my attention somewhere else. I had to remind myself that I was just fine, simply there for my every three-month appointment to see if my doctor wanted to tweak how much insulin I take for meals. It took several minutes to fully calm myself down, but even as I walked back to the exam room and waited for my doctor, there was a noticeable weight in my chest.

I’ve never wanted to share my story as one of inspiration. Instead, I want to use my experience to tell others that they are allowed to feel all of the complicated, messy feelings that go along with mental and physical illnesses. It has taken years of work for me to get to a point where I’m comfortable talking about both my diabetes and my anxiety, and it’s an ongoing process. When I was first diagnosed back in 2017, my immediate response to any questions about my situation was that everything was fine. I was fine. The truth was I had so many walls up that I truly didn’t know how I was feeling.

Try to keep this in mind: the person you are talking to does not need another reminder that their body or mind does not work in a typical way, they know that and are grappling with it in real-time. The discomfort you feel is multiplied by at least 10 times for us. We appreciate your concern, truly, but think a little bit harder before you speak.

For example, I often have people ask me if it’s OK for me to eat something. It’s always something particularly sugary. Anything from cupcakes someone brings to work for someone’s birthday to snacks in the break room. I know these questions come from a place of genuine concern for me, and I do appreciate it, but it can get a little annoying.
Every time someone asks me that, I want to give them a detailed explanation of exactly how much thought I put into every meal or snack I eat. When was the last time I ate? Did I take insulin for that? If so, has it been long enough to take more if I need it? If yes, how much do I need to take? Is my blood sugar already high? Is that food or drink worth the blood sugar spike it’ll give me even with the insulin in my system?

I do not have any hard feelings toward anyone who asks me questions about my condition. I am more than happy to explain things — as long as the question is not invasive or asked rudely, of course. Some people don’t want to talk about their conditions openly, and that is also perfectly fine. Not everyone with a chronic or mental illness is the same, nor do we all have the same experience.

We know these are uncomfortable topics, but if we’re willing to talk and you’re willing to listen, we might be able to get through the discomfort together.

Getty image by George Peters.

Originally published: September 27, 2022
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