but you don’t LOOK sick

I’m fully aware that most people reading this might have no idea that chronic illness is something I’ve struggled with. Sure, my friends might gently tease me for constantly being sick, and you might even remember times when I disappeared from school for weeks at a time growing up. I always tried to laugh it off or downplay how horrible I was feeling, because no one likes hanging out with the sick kid. I even got a crash course in “people will think you’re faking to be able to miss class” when I landed in the hospital during college, which was harder for me to brush off. It’s hard to be forgiving of yourself for your illness when no one else is.

A great quote I found recently by Toni Bernhard: “I blamed myself for not recovering from the initial viral infection–as if not regaining my health was my fault, a failure of will, somehow, or a deficit of character. This is a common reaction for people to have toward their illnesses. It’s not surprising, given that our culture tends to treat chronic illness as some kind of personal failure on the part of the afflicted–the bias is often implicit or unconscious, but it is nonetheless palpable.” We live in a society that absolutely blames the sick person for how they got there. Even doctors who care endlessly about the patient can sometimes allow their bias to seep through in their questions or comments about their condition. I can’t count the number of times when I try to explain my health difficulties to someone who responds with some sort of question about why I don’t just try harder to be better. Usually these people don’t realize how obsessive I already need to be about my schedule, my routines, and my diet on my doctor’s advice. After taking endless amounts of medication and participating in medical testing that never seems to find any answers, I’m tired. Trying to center your life around your health is hard, and makes you feel weak. It seems easier sometimes to just stop going to the doctor and hope that my body will figure out how to fix itself.

The thought of embracing my health problems has always seemed too far away. Sure, I’ll live with it and tolerate it, but I always felt that in order to embrace my problems, I would have to define myself as “sick”. I’m realizing more and more that that isn’t true at all. I’ve found since becoming an adult that there are more of us in the world who are chronically ill than I ever would have expected, and I’m not alone. Being chronically ill is not a deficit of character like I had felt it was when growing up. I’ve realized that the unspoken stigma around being chronically ill had wormed its way into my subconscious, and the way I thought about myself. I blamed myself for my symptoms, and kept pushing myself too hard despite how my body started to feel.

Even though you start to feel like you must be wrong, or you just want to give up on medical care and go home, your symptoms won’t go away. So, here I sit, writing this from a different city where I’m here to see different specialists. I gave up on my health for a couple years, and now I’m back. Maybe I’ll get some concrete answers and help, and maybe I won’t. I would normally try to end a post with some sort of happy optimism or advice, but I can’t really do that today. I don’t have the solutions. I’m also not going to be specific here about what I struggle with, because after having so much of your life be public, it’s necessary to keep some things private. I just write this in the hopes that someone will be able to relate. I hope that someone will read this and realize how important it is to validate people who are struggling. I hope that everyone reading this in good health will feel a little luckier today. And, of course, I write this hoping that it will ease my own stress. I’m a firm believer these days in not carrying more pain by yourself than you have to, and it’s important to unburden yourself every once in a while. If I know anything about chronic illness, it’s that it doesn’t go hand in hand with chronic stress. Remember to take care of yourself, everyone! Advocate for yourself within the healthcare system, and remember to listen to yourself. You deserve it.

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