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This Is What Happens When People Can’t ‘See’ Your Chronic Illness

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When I was diagnosed with a chronic illness, I didn’t get the same quota that you get when you’re told you have pneumonia or if you break your leg. I didn’t receive any “get well soon” cards or flowers (which I guess is a good thing as “get well soon” doesn’t really exist in the chronically ill community).

But we still appreciate the sentiments.

I don’t get much love for my illness. I get eye rolls and people annoyed at me talking about it again, but I don’t get much love.

I get people accusing me of using it as an “excuse” and comparing me to people with the same problems. But not love.

I get disbelieving shakes of the head and funny looks when pulling into a disabled parking space, but not love.

I get people telling me to “be positive” and “exercise more,” but I don’t get presents or hugs.

Imagine waking up one day and not being able to get out of bed; yesterday, you could run for the bus, but today you can’t move.

Now imagine feeling too ashamed to talk about it for fear of being dismissed, accused of faking, or being mocked. Because that’s what living with chronic illness is. That’s what happens when people can’t see your pain. They assume it doesn’t exist, or that you’re making it out to be much worse than it is.

Even your friends think you’re exaggerating, and even your family gets fed up when it encroaches on plans with them yet again.

When I tell people I have to pace myself or I’m not feeling too good, I literally brace myself for their reaction.

Nobody ever says it must be so hard; I admire your strength.

That’s why I write it down, and that’s why I share it on the internet with people I’ve never met. Because some of those people get it and they aren’t (at least not visibly) rolling their eyes at yet another post. People are happy to offer you their support for the occasional bout of misfortune, but when it’s ongoing, nobody wants to get dragged down with it.

I get it! I really do. I’m a realist; I know it’s hard for people to understand, and it can be miserable to hear about, but imagine living with it.

Imagine just for a minute that it’s you who’s sick all the time. Then imagine feeling like nobody cares. Feeling like you’re burdening people whenever you talk about it, feeling guilty for being sick. Imagine how lonely that gets.
 Everyone has their own battles and some people have it much worse than you or I; that’s a fact. Some people have the same illness on a different level, and some people have diseases that are killing them.
 Living with a chronic illness has taught me not to make assumptions about people’s lives, to believe people when they tell you they’re suffering, and to remember to check in on your friends. Pain changes people in different ways; sometimes it’s empowering and when you’re on top of it you feel like you’re winning, and other times it’s dark and makes you wonder what’s the point of living at all if this is how you’re destined to feel every day.

It’s overwhelming and hard to explain – but by sharing my experiences with it, I’m remaining “sane.” I’m not hiding, and so that is the reason behind “yet another” chronic illness post. If you know, you know.

This story originally appeared on the author’s blog.

Originally published: January 22, 2020
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