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When I Realized My 'Invisible' Illness Isn't Actually Invisible

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I was looking through old photos and thinking about how quickly things can change in the space of a year and I noticed one major change in my photos. I went from being a healthy-looking girl with a sporty frame to a person who looked like they were on the verge of snapping. All within the space of six months. It made me think about all the diagnoses and symptoms I had accumulated over the year and I realized they were all considered invisible. Except, I look visibly ill on camera. So why am I considered invisible?

How can somebody claim that I looked healthy when my skin had turned translucent, my hair was falling out and I had bags the size of Jupiter under my eyes? And that’s what you notice without even knowing me! In person it is even more visible: I climb the stairs at a tortoise’s pace and need breaks between floors, I have a noticeable limp from pain in my knees and I can’t say more than a few words without completely losing my train I thought. With all these very visible symptoms it makes you wonder what it would take to be classed as visibly ill. I am visibly ill to look at, some days more than others, but when I’m not wearing my braces or using a crutch I guess if you look at me for a split second you’d think I’m pain-free, but you’d only have to watch me for a minute or two to notice the effects that chronic illness has on me.

I have always been an energetic person who would choose the stairs over the lift, and I can safely say my energy levels are down to -10; as a result, I hear “you look tired” about 15 times a day. So there’s another visible symptom of my invisible illness. Maybe it’s the pain that’s classed as invisible? Actually no. I wince in pain when I move and people can definitely see that. I went to London with my college the other day and a stranger on the tube asked me if I needed an acetaminophen. I thought I was hiding my pain pretty well that day but obviously not. If a random guy who can’t have been watching me for longer than 30 seconds notices my pain, why can everyone else ignore it?

I think this might be why it’s called an invisible illness. Many people choose to ignore it out of awkwardness, and if you ignore something for long enough you can pretend it doesn’t exist. It’s like that thing people in primary school would do when they’d ignore someone over lunch and pretend they were invisible. I think this is what we’re doing. We’re just pretending it’s invisible for some unknown reason. I think it’s time to acknowledge that invisible illness isn’t always invisible.

Getty Image by egorr

Originally published: April 16, 2018
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