08 September 2011

Disease Envy

I am so very jealous. I am jealous to the point that I am angry. I am jealous to the point that I scoff in your general direction. I am jealous because you have cancer. Or diabetes. Or rheumatoid arthritis. Or Parkinson's. Or lyme disease. Or just about anything else. I am jealous because you have it and a bazillion other people have it and because you and those bazillion other people have each other. And I feel so very all alone.

Being diagnosed with intimal fibromuscular dysplasia first came as a relief—I got a name for what has been wrong with me. Within days of my diagnosis, I saw a post on the Mayo Clinic discussion boards from a young woman suffering gastrointestinal problems who had passed all GI workups with flying colors and who, despite medication, had uncontrolled blood pressure. The symptoms echoed my own. Another woman named Kari responded that the young woman might want to have her vascular system looked at—a comment with which I completely agreed and found unusual for someone to make. I posted as much and in no time Kari and I exchanged messages and discovered we share the FMD diagnosis. Since then I have made friends online with twelve other FMDers.

Read that again—twelve. Granted, I'm new at this, so I haven't met the other 70 or so people who "like" the FMDSA's Facebook page. Some of those who like the page aren't patients though—they're friends and family members of patients. Using those numbers, FMD patients number fewer than two per state. No, not everyone who has FMD is on Facebook. No, not everyone who has FMD has been diagnosed. But COME THE FRIG ON! We're like some freakish pygmy tribe, and the grand irony is that we'd be jerks to want more tribal members. FMD has no real treatment and no cure. Who would wish that on anyone, even if it meant a new friend? "You have FMD? I have FMD! Let's get sick and die together, yay!"

As even further isolation, I do not have the primary form of FMD. I have the rare version of the rare disease. I've met one other girl who has it. She lives in South Africa. I've asked around the FMD community looking for other IFMD patients. So far—no luck. It's me and my new South African sister. She is younger than I am and is scheduled for a desperately needed surgery to bypass her abdominal arteries—the same surgery that I had at age 25—and with the same doctor in Cleveland who made my diagnosis. However, she's traveling to the United States from South Africa, which costs a pretty penny, never mind the surgery itself. If you've got a mind to get involved and help her cause, that would be awesome. I really can't have her going out on me. Do you have any idea how it would feel to be the ONLY person I know with IFMD?

And so I'm jealous. Jealous of all you people with your more common diseases that everyone knows someone who has. Jealous of your theme colors (particularly you breast cancer patients and your pink—really co-opted that one there didn't you?). I'm jealous of your fun runs and baseball theme nights and famous spokespersons. In reality, I get it. The diseases that get all the attention are the ones that have the most likelihood to occur. They're the diseases that people have learned to be afraid of and so great research is done to find their cure and great shows of comradeship and support are made. I get it. Having a more commonly occurring disease is still a potentially devastating experience, and an individual's suffering is made no less simply because a disease is a household name.

However, I am asking you all to do this—please think of the others of us who have a rare disease. Please think of those of us who do not have the awesome numbers and networks and funding and fights for a cure. Support us because so few do. Support us because you've never heard of our disease. Support us because we're not going to send you address labels or a fancy calendar or a t-shirt to wear out jogging. Support us because we're lonely and we're scared—just like everybody else.

Donate to the National Organization for Rare Disorders
Learn about Rare Disease Day

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"We are what we think. All that we are arises with our thoughts. With our thoughts, we make the world." — Buddha