What I Should Have Told My Friends About My Intracranial Hypertension

As I write this, it’s coming up on the second anniversary of my official diagnosis of intracranial hypertension (a.k.a. pseudeotumor cerebri) and after two years I’ve realized I should have told my friends it was going to change me not only for the better, but for the worse as well.

If you’re not familiar with PTC/IH, it means my body produces too much spinal fluid which causes my brain to think there is a tumor but there isn’t a physical tumor there. The symptoms that are most well-known are unbearable headaches, memory loss/brain fog, vision problems and vertigo/dizziness. Try explaining that to someone on the street, much less a friend!

I should probably back up and say that I was 99 percent sure I had my condition about five months before my diagnosis, but I wasn’t working and didn’t have insurance at the time. I thought I’d prepared myself for the diagnosis and prepared a few close friends for what was to come, but once I got the official diagnosis I realized I’d been naive and unprepared – especially when it comes to the brain fog and memory loss. I’ve been known my whole life as the “girl who remembers everything,” so when I started forgetting things, I knew something was wrong! Friends and family seriously will call or text me and ask me when or where something happened. My long-term memory is still intact for the most part.

The little things I took for granted – like playing with my nephew or my friends’ kids, jumping and spinning around with them or going to their birthday parties – has become more of a challenge because of lights, sounds and the fact that I can’t just eat anything any more. This has changed me.

My immune system has become incredibly weakened in the last four years, but especially so in the last two. The day I got officially diagnosed, I discovered I had type A flu, and in the next three months I got bronchitis, type B flu, a chest infection on top of it and then a sinus infection. This keeps me from being around my friends and family, even if they just have a “little cold.”

I’ve been extremely lucky in that I had strong friendships to begin with, but after my diagnoses they’ve actually become stronger. I’ve realized just how much a support system of friends can mean to you!

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