What “Being Rare” Has Taught Me

Two weeks before diagnosis.

Two weeks before diagnosis.

They say ignorance is bliss, and I would have to agree. In the weeks leading up to my hospitalization and being diagnosed with a rare disease, the last thing I thought about was anything health related. I was more focused on work and the daily stresses of life. Then when my world came crashing down, my focus was forced to shift. All of the sudden, I had to live day by day. I was no longer working for the weekend (be honest, you started singing that song in your head), the things that take up my time had to be carefully considered. These last 7 1/2 months have given me some interesting lessons.

I became sassy: first time meeting my doctors at UM I wore an FSU shirt.

I became sassy: first time meeting my doctors at UM I wore an FSU shirt.

Medicine isn’t just for doctors: I use to think you just show up at the doctor’s office, they give you some pills and you are well again. Once you become chronically ill, that isn’t true anymore. I became partners with my doctors, the line of communication was different because I was an active participant in my health. I started reading studies, researching treatment options and giving my opinion on how we should approach ITP. Ultimately, I asked for Rituxan and to be taken off prednisone. Those decisions gave me a sense of control that had been missing from my life. I began to practice medicine as a patient, it was powerful.

IMG_2335Needles aren’t that bad: I remember dreading shots growing up. The thought of having to get stuck with a needle was terrifying. The day I went to the ER, I remember this guy coming in to put this magical device on me via a large, scary needle. He asked me, “Are you brave?” I think said something along the lines of I can be. At that moment I was freaking out, probably not the best question to ask me at that time! Now I look back and laugh, I never felt him put the tube in my wrist. That was the beginning of my ongoing affair with needles. Other than the one hand tap for chemo, being stuck doesn’t phase me now.

You discover real friendships: After getting sick, you quickly discover who is in it for the long haul. I had some wonderful friends visit me at the hospital. People reached out and offered some much needed advice. I connected with new friends who have become an important part of my journey in redefining myself. I also flushed out the negative people in my life. With very little extra energy every day, I refuse to spend it on people who aren’t worth my time!

And my greatest lesson:

I’m no less of a person because I’m sick

Leave a Reply