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Living With Chronic Illness When You've Always Been Told, 'There's Nothing Wrong With You'

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It’s strange how much chronic illness can mess with your mind, both in the physiological and psychological sense.

Here I’ve written a personal reflection that maybe some of you would be able to relate to if you’ve gone undiagnosed for a long time, or if you also struggle with mental illness as a comorbidity.

I’ve been doing a lot of thinking lately as my overall health has worsened and spun far out of my control. My health has always been out of my control, and this is because for so long, probably most of my life, I have been undiagnosed.

OK so, get this. I’ve likely had the majority of my conditions my entire life. I was born with intracranial hypertension (at least the predisposition). Whether it was because I was premature and that’s the primary reason for my stenosed veins, or because I had a class A brain hemorrhage at birth, I was likely predisposed to this condition. Intracranial hypertension can be worsened by so many factors and was likely perpetuated in my teens through birth control and tetracycline antibiotics.

If I do in fact have endometriosis (and it’s looking like I might), there is some research that suggests I may have been born with it. Also, many doctors are unaware that there can be a hormonal connection between IIH and reproductive issues; I finally got the top neurosurgeon on the east coast to once and for all verify that for me after experiencing the correlation myself and hearing about it over and over through people in online support groups.

Then we have the dysautonomia, which in my case is predominately a result of my high intracranial pressure. I was likely born with Ehlers-Danlos syndrome, and my neuropathy and everything else is a result of medications I’ve taken and complications from my existing issues.

So point is, I’ve had most of this to a degree my entire life. When I was a kid, I would continually go to the doctor because I was “hearing weird sounds in my ears” or “seeing funny spots in my eyes.” “You’re fine,” they would tell me. “You’re a hypochondriac,” others would say. I always had a hard time running when I played sports and it’s very likely because my heart rate was getting way too high and potentially my blood pressure dropping too low, not because I was weak like I was conditioned to think!

This doesn’t discount how my anxiety was also a factor. I always had health anxiety growing up which makes my situation almost comical in a sense. We’re blessed with the struggles that we need to help us grow, I guess. My health anxiety growing up was so bad that I couldn’t go on outings with friends without thinking myself into panic attacks because I was afraid of getting sick. Every sleepover I went to, I would always feel my forehead to make sure I didn’t have a fever. The list goes on, really. But the truth was, I truly didn’t feel well. And the fact that my health has actually gotten so bad lately has gotten me thinking how much of it all really was anxiety as a kid? How much of my anxiety as a whole stemmed from my very real physical issues and spiraled, and not the other way around? How will I ever know what came first?

The truth is, I don’t have to know. All I have to do is continue to do my best to treat what I’m dealing with in the here and now. It is what it is, and I can’t change what caused what. It would be interesting to know though, maybe even helpful. In a way, it feels like there’s this big piece of the puzzle missing and I need to solve it to make myself feel more whole. It’s one of those things that makes solving my mental health problems so tricky because my physical issues could be causing so much.

My whole life up until really this year, I always heard “there’s nothing wrong with you,” and in a snarky, judgmental tone a lot of the time, too. Even though I don’t believe it (I mean, I can’t believe it; I actually have a lot of diagnoses now!) I still kind of do on some level if that even makes sense. There’s still a part of me that has those words ingrained in my being.

I can lay here feeling absolutely terrible, yet there is still that part of my mind that perpetually goes, “It’s OK, you’re not really that sick… they told me I was well.”

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Originally published: November 15, 2016
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