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No, My Invisible Disease Is Not 'All in My Head'

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I’ve always been a sickly kid.

I had pneumonia nine times before the age of 10. I grew up using a breathing machine every few months. When I was 14, my eyes were mysteriously crossed for three months, to the confoundment of every doctor I visited. For two years in high school I suffered from debilitating chronic migraines. I’ve had pretty much every test and procedure a human can have at this point, from EEGs to CTs to colonoscopies.

And when I was 17, I was diagnosed with Crohn’s disease.

When you’re sick all the time, people tend to want to find simpler explanations. And the simplest explanation of all, it seems, is that it’s all in your head. It’s a lot easier for people to stomach that you want attention, or are just a bit anxious and neurotic, than that a teenage girl is just legitimately ill, and often.

So because of that, and because it seems I’ve been sick with some odd illness or another since before I could talk, the hypochondriac comments have also been a hallmark of my existence. It doesn’t help that as an adult, I’ve also had anxiety and panic disorder. If you’re mentally ill, it’s super easy for everyone from doctors to acquaintances to chalk up your physical symptoms to something you’ve made up in your mind.

But here’s the thing — being chronically ill sucks. It’s physically trying because hey, pain, but it’s also mentally trying for a number of un-fun reasons. And one of the biggest reasons? Feeling like you have to prove to people how sick you really are.

When people reach for the hypochondriac thing, it makes patients feel like they have to prove themselves — and believe me, they can. My illness is “invisible,” but I could show you blood panels that “prove” just how high the inflammation in my body is. Better yet, if I’m feeling particularly sassy, I can show you a picture of the inside of my colon. Because I have it on my phone.

Point being, you should never make an ill person feel like they have to prove themselves to you. I know it sounds unbelievable that I’m flaring yet again, or that I’ve got another infection. But since I’m the one who has to deal with that physically, instead of opting for emotions like disbelief or skepticism, go for support. Honestly, the best thing a person could give most sick patients is unyielding support and belief.

And when you don’t believe someone who’s sick, you’re probably also making them doubt themselves, which can be bad for their health. Because I had grown up with bad internalized feelings surrounding feeling like my disease was all in my head, it took way longer than it should have for me to be diagnosed with Crohn’s. I thought having stomachaches on a daily basis and not being able to eat was somehow a thing I had done to myself. That’s why, while my diagnosis was one of the hardest things I’ve ever dealt with, it was also a relief. There was something actually, medically wrong.

While there are always going to be people out there who exaggerate their symptoms for attention or actually do have hypochondria, I think the number of those people is much smaller than the number of people actually struggling every single day with random diseases and weird aches and pains. So before you call me a hypochondriac, think about just being a kinder human instead. Unless of course you really want to see the inside of my colon, because we can make that happen, too.

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Originally published: October 27, 2016
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