What I Wish People Knew About My Illness, Even When I Look Fine

I haven’t quite decided what I think is worse: living with a chronic illness or living with an invisible chronic illness. I’ve come to find people don’t realize it’s offensive, not a compliment, to say, “But you don’t look sick!” Let me tell you something: Looking healthy doesn’t make this any easier. It makes it even harder. It means having to explain in detail why you have to miss class or work. Being registered with disability services is not enough; a quizzical stare is enough to make me start panicking and rattling off information about what I’m dealing with — which, quite frankly, no one should have to do.

What I wish people understood is being ill does not get easier with time. It gets harder. Your body gets broken down. And then your mental state goes, too. Sure, you may adjust to the physical pain, but you never truly adjust to the sense of panic that sets in — the constant state of anxiety you’re in, waiting for your body to fail you once again. You never get used to feeling like a burden, feeling embarrassed. You never get used to those around you saying, “Again?! Weren’t you just in the hospital?” Yes. Yes, I was. Thank you for the lovely reminder!

The absolute worst part, though? The feeling of isolation. I don’t just mean at 3 a.m. when you’re alone in your hospital bed, listening to the steady drip of the IV. I mean the embarrassing feeling of having to explain that you’re sick, again. Or learning it’s not worth it to tell people; it’s easier to just deal with it on your own. You fear breaking down again. Everyone tells you to be strong, to take better care of yourself. They assume if you get sick fairly regularly then you should handle it better every time. I sure as hell don’t.

Every time I get sick, I launch myself back into thinking of the amazing job opportunities I’ve lost out on. The amount of class time I’ve lost out on. The nights with friends I’ve lost out on. The friends I’ve lost in general. You eventually get to a point where you learn to cut out the people who expect you to adjust to pain. Your soul will never adjust to this level of pain. So you ask for something for the pain. Except it turns out there is nothing that will numb your feelings.

For anyone who is feeling or has ever felt this way, I believe the sooner you accept there is nothing that will fully take away the pain, that your illness is here to stay — that, like it or not, you will never “get used to it” — the sooner you will begin to take care of yourself. There is nothing wrong with allowing yourself to feel this pain every once in a while. There is nothing wrong with going through therapy. There is nothing wrong with allowing it to feel real. For me, removing the sense of guilt I get for feeling so down — when I know there are so many people who are far sicker than me, who are probably handling it much better in this moment — is really difficult. But I have learned to understand that “pain” is subjective and arbitrary. It is also not a competition. It is OK to feel.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.