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Why It's Not Easy Having an Idiopathic Diagnosis

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It has now been eight months since I was diagnosed with idiopathic intracranial hypertension, a rare condition that causes an increase in pressure around my brain.

When I was first diagnosed, I couldn’t believe it was really happening. As I sat there listening to the doctor tell me I needed to go straight to the emergency room, I couldn’t even comprehend what he was saying. I’d gone in expecting to be diagnosed with migraines and given some medication. Instead I was told that I needed a spinal tap right now or I would lose my vision.

Seeing a doctor in a state of panic about your health is a really terrifying feeling. Being rushed in at the emergency room, pushed ahead of everyone else and in a bed within five minutes of getting there is also completely terrifying. These are signs that something is seriously wrong.

I was admitted to the hospital and needlessly kept on the neurological unit for two weeks because the doctors didn’t know what was wrong with me. I had everything from lupus to brain cancer thrown at me. In the end, it got chalked up to “well maybe it was just a virus.”

Maybe it was just a virus, yet here I am eight months later, practically blind in my right eye, living with crippling headaches every week and ridiculously severe fatigue despite being on medication.

Even now, I find it hard to wrap my mind around the fact that there’s something so wrong with me and, honestly, no one really knows what it is. Idiopathic means that there is no known cause. I got a flu one day, and now I’ll be sick for the rest of my life, and no one can really tell me why.

All I can do is get out of bed every morning, shower, eat, and go on with my day. There are good days and bad days, but for the most part I just work on making it to the end of each one so I can keep doing it again. I hope every day will get me closer to a cure and to the answers all of us with this condition wish for and need.

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Getty  Images photo via splendens

Originally published: January 24, 2018
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