Dare to Be Rare!

The story of Donna

I have a rare disease. It’s called mastocytosis. http://www.tmsforacure.org/welcome.php

If you say you have diabetes, heart disease, or cancer, people are immediately sympathetic! If you say you have mastocytosis, or neurofibromatosis, which my family has as well, or thousands of other rare diseases, you get a blank stare.
You have to explain, which is tiring when you already have limited energy.
Having a rare disease is too “weird” for some people. They think you’re making it up to get attention, or even that you’re mentally ill. Others think they might “get it” from you. You become a pariah. You lose friends, sometimes even family members, just when you need them the most.

It may take you decades to get a diagnosis, that’s if you’re lucky. I was 54 before I received mine. I’m fortunate to work in the medical profession because I made my own diagnosis after 17 medical specialists failed to recognize my disorder, even though it was staring them right in the face. My flushed red cheeks and other symptoms were a dead giveaway. Still, they missed it. And missed it. And missed it, x17. As a result, in December 2013, I believe almost died from anaphylaxis that went unrecognized. A simple blood test would have made all the difference.

All that time you’re undiagnosed, you’re **sick.** You know in your bones that something is dreadfully wrong (In my case this is quite literally true; I have the eroded bones of an 80 year old woman, and they ache, sometimes horribly…). But you try to “suck it up,” and not complain. Only sometimes, you can’t keep it in. Sometimes, your gnawing anxiety and your physical pain seep to the surface and your feelings leak out. You try to talk about what’s wrong when it presses too hard deep inside. Then, you’re seen as a “whiner” and a “wimp.”

Even doctors are unsympathetic. You’re passed from specialist to specialist. Some are kind; others are dismissive. Some are incredibly rude. Some suspect you of malingering to get out of working. Many sigh and use vague terms like “stress” to sum up your problems, implying that it’s “all in your head.”

If you’re really sick, you pull back from life to stay alive. You go to work if you’re lucky enough to be well enough to work. You drag through your day, and then you go home to rest. You turn down offers to attend fun activities because you know you won’t be able to manage them. Soon, the offers stop coming. You’re a downer. You lose more friends. This is the rare disease experience for many.

Many of us are afraid to tell our stories. We’re afraid of what others may think.

Not me. Today, I dare to be rare. Today, I dare to share.

Join the international Mastocytosis community to discuss with others who understand: https://www.rareconnect.org/en/community/mastocytosis-and-mast-cell-activation-disorders