I remember the day perfectly; it was the last day that life would feel normal.
I was working at a local tire shop when I felt intense pain in my head, lost my balance, blacked out, and fell off a ladder. I had no health insurance at the time and went to the hospital thinking I had a bad ear infection. The doctors gave me a list of everything that could be happening and the last thing they listed was “Pseudotumor Cerebri.” I panicked because I heard “tumor” but the doctors told me that was extremely rare and not to worry about it. Imagine the shock when after the anxiety-inducing tests and painful spinal taps, I found out that I had a rare illness.
After the diagnosis, life just started changing faster than I could keep up. Suddenly it was unsafe for me to lift the weight of tires and I had to leave my job, and eventually, this illness just completely debilitated me.
Now I’ve been living with IIH for 7 years and I have undergone 2 VP shuntA hollow tube that can be surgically placed in the sinus to help drain cerebrospinal fluid. surgeries and almost 22 spinal taps. I still deal with pain every day. I have been on permanent disability since I was 21 years old. Not being able to go to school, have a job or even go out and have fun like people my age put me into a depression for a long time and had me mourning my old life.
After your diagnosis, you may feel that way too. You might have to leave your job. You might have friends leave your life, and you might even feel like you are a “burden” to those you love.
But I can tell you it gets better! Those who truly matter will stick around through it all. You will adjust to your new normal and you will kick this awful illness in the ass! My advice? Fill your freezer up with ice packs, have a steady supply of Gatorade, don’t stop searching for the right doctor to take you seriously, and join the online support groups!
I try to put myself online as much as possible for others living with IIH and if you are struggling with your diagnosis you can find me on Instagram @candace.j.tilley.