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To the Person Who Received a Life-Changing Chronic Illness Diagnosis

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It was August 2013 and my then-fiance (now husband) and I had just moved in together. We were vacationing in South Carolina, and I was meeting my future in-laws for the first time when the headaches started. It wasn’t until that November that I received the diagnosis that would forever change our lives. Idiopathic intracranial hypertension (IIH) is a rare neurological disorder in which the body produces too much spinal fluid and can’t reabsorb it properly, so the fluid keeps building inside the skull, putting immense pressure on the brain and optic nerves. There is no known cure, and if left untreated, it can lead to blindness and can even be fatal. I had a shunt placed inside my head that carries the excess fluid to my abdomen, where it is then reabsorbed into the body.

Like most people, I had never even heard of IIH before I was diagnosed with it two years ago. Since then, I have learned a few things about being sick.

You might grieve the life you had before getting sick.

I look around at my friends and peers and they are thriving in careers they love, starting families and living their lives to the fullest. My life revolves around doctors, medications and wondering how long this shunt is going to last before I need a new one. I miss who I was before I got sick. I miss the things I can no longer do. But over the last two years, I have come to accept my life for what it is, and I try to make the best out of whatever situation I find myself in.

You’re going to spend a lot of time waiting.

Waiting to see doctors. Waiting for test results, and preauthorizations, medication fills and the list goes on and on. I joke that this is God’s way of teaching me patience since before getting sick I really didn’t have any to speak of. It’s OK, I am a work in progress.

People might walk out of your life.

For whatever reason, some people will edge their way out of your life. Whether it’s because they think you’re contagious, or they simply don’t know how to act around you anymore, some people are going to leave for no real reason. You will realize these people didn’t really belong in your life to begin with, and you will survive and flourish without them, I promise.

There is support out there for you.

It took me six months before I thought to look up support groups for people with IIH on Facebook, but when I did, I found a wonderful second family who understands what I’m going through more than anyone else ever will, and I love them all dearly. Do a Google search. Find these support groups and become active in them. Some days they will be all you have, and you have to lean on these people for support when you need it. Don’t worry about being judged — they all know what you’re going through.

Some days are just going to suck.

Being chronically ill is, to my surprise, lonely and isolating. When you only leave the house for doctor’s appointments and life seems to be passing you by and the walls are closing in, it can get super depressing. There are going to be days when you’re sad, or mad, or you feel like you don’t have the energy to go on another second. These feelings are completely normal, and it’s OK to have them from time to time. Find an outlet to deal with these feelings. Do what you need to do to deal with them, whether it’s crying, yelling or sulking for a day or two. Just remember when you get your “second wind,” you have to keep fighting. Don’t ever stop fighting for yourself, as you are your own biggest advocate.

Getting sick was not in any of my future plans, but it happened anyway, and honestly, I am a better person because of it. I appreciate the small things, like pain-free days spent enjoying our nephews, and I love them with everything I have. Getting sick was not the end of the world for me, and it’s not going to be for you. Although it may take me longer to do things, or I have to improvise because of my limitations, I am still very much alive, and I am choosing to live.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Originally published: January 7, 2016
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