Rare Disease Day 2017

Rare Disease Day 2017

I’m aware that I’m rare

After a while you get used to it. The barely suppressed delight on the face of the newly minted intern or medical student who has only read about your condition and now sees an actual specimen in the wild. I’ve become accustomed to groups of doctors listening in on exams while steadfastly taking notes as my history is rattled off once again.

My way of dealing with it is through encouragement. Hey, here I am with all of my textbook symptoms, look and learn about the seemingly unconnected set of symptoms that all add up to make-up my rare disease. After all, I am the one who has lived through the diagnoses and treatment of three separate occurrences of Cushing’s Disease over the last 18 years, so who better to tell you what it’s really like?

So ask all the questions you like. I’m happy to answer them. I’d much rather educate than have someone else be told it’s all in her head, which, as it turned out in my case was a version of the truth, since that is where my pituitary was located.

And the asking of questions does not stop at medical personnel. I have a close friend who always, when she checks in on me from the other side of the country (and at times, the other side of the world), asks about my latest health issues. Then she goes and looks them up. Her taking extra the time to educate herself in what’s going on means the world to me. She knows what comes along with each new diagnosis and what questions to ask.

I realize that not everyone is as inclined have an open door policy when it comes to health, and that’s okay too. It’s a personal decision to take that step toward sharing, one that took me a long time to get to, so I understand if you would prefer to keep your details under wraps.

So, yes, I am aware that I am rare and I’m happy to share. Asking to learn about what’s going on just shows me that you care.

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