Why It's Not Easy Having an Idiopathic Diagnosis


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.

We want to hear your story. Become a Mighty contributor here.

Getty  Images photo via splendens


Find this story helpful? Share it with someone you care about.


Related to Idiopathic Intracranial Hypertension

woman crossing her arms against a chalkboard with muscled arms flexing

The Feeling of Validation After You've Fought for Your Health

It seems like I always have to fight for myself when it comes to my health. Before, it was when I was first started having seizures. No doctor believed me. They thought I was using drugs, making it up and everything in between – but I still kept fighting. If one doctor didn’t believe me I went to [...]
woman sitting outside in the grass smiling with her eyes closed

How Letting Go of My Old Dreams Allowed Me to Succeed in Life With Chronic Illness

Martin Luther King, Jr. said, “I have a dream.” I too had a dream. I knew what I wanted out of life from a young age. I had a calling and that was medicine and healthcare. I decided nursing was my best fit early in my high school career when my peers were busy planning [...]
portrait of a woman with colorful earrings looking off into the distance

What to Remember When Chronic Illness Makes You Feel Like a Burden

We’ve all felt like a burden at some time or another, but of course we may not want to admit it. Admit how hard it is to have to depend on someone for everything. It’s hard to have to ask for money or ask for a ride to yet another doctor appointment or physical therapy visit. [...]
anesthesiologists preparing to put a patient to sleep

To the Anesthesiologist Making Jokes Before My Brain Surgery

An open letter to my anesthesiologists: Every single day you walk into work and treat people who are sick. Most people you only see once and they are “fixed.” You put them to sleep, a quiet slumber. It’s so quick on the patient end. It feels like a blink. It’s not restful. We wake up disoriented [...]