Why People With Invisible Illnesses Saying ‘I’m Not Crazy’ Hurts Me

Recently, people with rare and/or invisible illnesses are gaining more recognition and finding community on social media. On TikTok, creators can connect using the hashtags: #spoonie, #ehlers danlos syndrome, #pots, #zebra, among others. They share advice, send each other encouragement and generally show how strong and resilient they are. But there’s one message that seems to be repeated, over and over, that feels like a kick to the gut for me — “I’m not crazy.”

• What is Bipolar disorder?

Many people with rare or invisible illnesses will tell you it can be very difficult to get the right diagnosis and treatment. I empathize — I have a couple invisible (physical) illnesses. I know it can be frustrating and exhausting to try to find the right doctor and get the necessary tests. In the process of getting the right diagnosis, sometimes the possibility of a mental illness is mentioned. And judging from the reactions I see online, this is the worst possible thing that can happen to a person.

“It’s not just in my head!”

“The doctor looked at me like I was crazy!”

“He asked if I would like to talk to a psychiatrist! I’m not nuts!”

Now, I understand these people are just after the right diagnosis. So was I. I could barely sleep. I felt like there were bugs crawling under my skin and there was electricity flowing through me. My mind and eyes couldn’t stay still enough to read through two pages of a book. Lights seemed too bright and noises too loud. I knew I wasn’t “crazy.” I had a wonderful upbringing, did really well in high school, had great friends and was now living on my own and studying engineering in university. I was the very opposite of “crazy.” But something was wrong. And I didn’t know quite how to articulate it, but I knew it would kill me. The exact details are foggy to me, but I ended up in the emergency room and eventually saw a psychiatrist. Turns out, I had bipolar disorder. I was “crazy” after all.

I won’t lie, it sucks having a serious mental illness. There aren’t as many treatment options as you would think, given how prevalent mental illness is. And the treatments often come with a laundry list of side effects. But one of the worst things I have dealt with is the stigma that comes with this diagnosis.

Obviously, my close friends and family know, but other than that, I keep it private. Why? Well, even people who should “know better” can be discriminatory. In medical settings, I have to disclose my illness. I had a dental surgeon deny me care. I had a family doctor tell me I wasn’t sick and to go home, take a bunch of my sedating medications and sleep until I felt better. (Turns out I had H1N1 and two weeks later had pneumonia and an ear infection so severe I lost my hearing in my left ear for four months.) I have had several professors refuse to grant even the simplest of academic accommodations.

Here’s the important part — it felt like the end of the world getting that diagnosis, but it wasn’t. I am here, over 20 years later, learning, adapting, moving forward. But when I hear people in the rare and invisible illness community so upset at the slightest suggestion they might have a mental illness, I feel stigmatized and marginalized, by people who should know better.

This is what we need to come together on: illness is illness. Bipolar disorder may be “just in my head,” but that doesn’t make the mental, emotional and  physical symptoms any less real. It also isn’t something I am making up. Studies have shown people with bipolar disorder have brains with functional and structural differences. My brain is different and that has caused an illness. Maybe your heart is different, or your pancreas is fussy, or your stomach is slow, and that is what has caused your illness. We face enough challenges with what our strange bodies have done to us. It is important we don’t further divide and use language that discriminates against other people.

There is a difference between the sentiment of, “He suggested my symptoms might be because of an anxiety disorder, but I feel like that’s not the right diagnosis,” and “It’s not in my head! I’m not crazy!” So, please consider the impact of your words.