My Chronic Illness Doesn't Have to Be the 'Elephant in the Room'

Some people don’t believe I really have anything wrong with me besides the name of my diagnosis, and I kind of get it. I know I don’t look very sick most of the time. That’s because I don’t like people seeing me when I am sick. People with chronic illnesses usually don’t feel comfortable showing that side if they can help it. But can you blame us? Usually family and friends never quite know how to handle having someone in their life when there is a diagnosis of chronic illness. When someone gets sick, the common response is “get well soon!” but what are they supposed to say when it’s obvious you won’t get better?

Misunderstanding turns into judgement, where I hear things like:

“You were able to go out last weekend so why not tonight?”

“You really aren’t that sick – you have been going to class all week.”

“It’s not just a coincidence you’re sick every time you get stressed.”

Well, I don’t exactly have control over this kind of thing. Sometimes I will try to fight it, or I get so tired of being… sick and tired, that I do things I shouldn’t anyways. Having two beers with a friend will lead to inflammation, causing fevers, pain, and usually asthma. But I’ll go out and have a beer anyways, since I won’t ever get completely back to normal. No amount of bed rest will cure me.

Sometimes being sick the next day is worth it.

You see me on Facebook smiling, going outside or to social events. I am a 21 year old that’s supposed to be partying at bars after all. But I don’t show the temperature fluctuations I get, or the fact that the one picture was all I had energy for and then I went home. Some days I do feel better, but remember feeling better for someone with a chronic illness normally means being able to function temporarily, as it usually doesn’t last very long.

Professors in college have repeatedly questioned my doctor’s notes credibility, besides the fact that it has lettering from a major hospital and my doctors phone number listed on it. With so much contradicting day-to-day, chronic illness can start to seem fake even to the ones having it. I start to wonder if I am really sick, if maybe the medications I am on aren’t really working because it’s “all in my head.” I’ve seen the blood work on paper and done the testing multiple times but even hard physical proof can seem unimportant when so many important people in your life start to question your well-being.

I know most people never bother understanding chronic illness, as they shouldn’t have to. But for the ones that have them, please ask questions if you have any. The more you ask, the less guilt or burden is felt for having the disease. If my health issues are recognized then I don’t feel like I need to hide it as much. Nothing is more exhausting than dealing with symptoms and having to pretend like nothing is wrong. Please acknowledge I have something wrong with my body, and that it is a part of me. Be involved, you can ask what symptoms I’m having today. You can ask what my disease causes or what I can or can’t do. You can ask if I’m OK.

What I have is real. My condition is a chronic illness which has no known proven treatment or cure yet. I am in medical studies, following every research article I find and trying every option the doctors will give me. But it doesn’t have to be the elephant in the room or an embarrassing topic. So please ask me anything you want about it. It would be so nice to know that what I now have is accepted as a part of my life and can be validated by those I care about.

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