Calluses From Living Rare

Last week, I was forced to reflect on the last five years of my life. The diagnosis, the treatments, the risks, and reward of remission for over four years. The heartbreaks that came from losing people (and my dog) to things I could not save them from, no matter how hard I tried. It was the first time I told my story from start to finish. It was also the beginning of my self realization that I am a completely different person from who I was on April 30th, 2014, the day before my D-day (diagnosis day). 

Before ITP, I was a tough chick with a no nonsense attitude. But I had no calluses. That came to an abrupt halt on May 1st, 2014. Baptism by fire, taking on a dysfunctional body in a broken system that does little to help patients like me. There was no soft introduction into the world of rare diseases, I was simply dropped into the pit and expected to sink or swim.

I was forced to become my own advocate, to research, absorb, digest, and become the expert on ITP. My view of physicians changed from putting my implicit trust in them, to questioning everything. I no longer wore rose colored glasses when it came to my views on healthcare. I was being raked over hot coals, and that’s how I developed my calluses. 

There is a certain level of pressure to be gentle, warm, and kind as a patient. I’d like to think I have retained those qualities over the last five years, but they’re not as apparent now. It’s hidden underneath a hardened exterior, one I had no control over developing because I needed it for survival. It builds through every bump in the road, side effects from treatments, disappointing lab results, and just the overall way life can seem to come down on you during difficult times.

To every rare disease patient who takes time to reflect on their patient odyssey, don’t beat yourself up over a hardened exterior. While we do our best to navigate a system that constantly throws us curveballs, a roughed up exterior is part of the package. Wear your calluses with pride, you earned them like your zebra stripes.

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