Misconceptions About My Rare Disease

It's hard to know exactly what someone else is going through, especially if the other person has a rare disease that most people have never heard of.

I think it's human nature to fill in the blanks with thoughts based on our own lives, experiences, and perceptions, but that's where false assumptions and misconceptions can develop.

Misconceptions I've heard about my rare disease

That I'm used to it, and it doesn't phase me

I've had discussions with family members about this numerous times. I don't verbally narrate everything that I'm feeling every moment. Some days are better, some days are awful. Yes, I've been navigating my life with multiple autoimmune conditions for years, but I still have daily frustrations, ongoing concerns, unexpected hurdles, and new challenges.

If I look okay, I am okay

Nope, nope, nope. There are many different invisible illnesses that are impossible to see or understand just from looking at someone. As for my personal symptoms that were slightly more visible, I often utilized tricks and techniques to help mask those symptoms. Just because I sometimes did a good job of hiding it, it doesn't mean it isn't there.

That surgery fixes everything

While this may be the case for other conditions, surgery certainly didn't fix everything for me. Yes, it made living with my condition so much better and easier, but my disease still impacts me and requires management every day.

That I want to talk about my condition all the time

"How are your eyes doing?" I'm often asked when making small talk with someone I haven't seen in a while. It's usually asked in a similar casual tone as, "What's the weather like today? A little cloudy perhaps?" While I think this situation does sometimes stem from a place of genuine care, other times I think it's a default, as if someone is thinking, "I don't know what to say next. Hmm, what do I remember Jessica being busy with recently...Oh yes, she's been going through some medical stuff. I'll ask about that."

I'm more open about my conditions with certain people, but it can be a very sensitive topic, especially if I'm in the middle of a bad day. I am so much more than my diseases, and most of the time I'd much rather talk about the weather.

That people with chronic conditions are lazy

This is always upsetting to hear, because just taking care of myself sometimes feels like a full time job. I'm frequently dashing to multiple specialist appointments, refilling medications, trying to relieve symptoms, navigating surgery recovery, doing extra prep work for work/social events so I can attend safely, reading up on the latest research, navigating discriminatory comments, and advocating within the community all while working multiple jobs, staying up to date on current events, managing my home, and maintaining relationships.

On a good day this is challenging. On a bad day when my body is wreaking havoc on itself, some tasks are just not possible, and that doesn't make me lazy.

That I wouldn't be sick if I just exercised and ate healthy

I think people are often surprised when I explain that I've been a professional fitness instructor for 15 years and I eat a lot of nutrient-dense foods. People who exercise and eat vegetables are not immune to developing medical conditions. While some conditions are supported by very specific dietary/lifestyle changes, broccoli and downward facing dog are not cures.

That somehow this is my fault

This is one of the sadder things that I sometimes hear people implying. For so many of us in the community, our diseases are genetic or brought about by other factors completely outside of our control. I don't want to be sick, and I didn't do this to myself.

What misconceptions about rare diseases have you experienced? Share with us in the comments below.