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Everybody’s Got Something: Reflections on Rare Disease Day

February 29, 2012

Today is Rare Disease Day, a day set aside by the National Organization of Rare Diseases and other international groups to raise awareness for this group of conditions. A rare disease is one that affects less than 200,000 Americans. Taken together, however, 10% of Americans have a rare disease.

I believe that number is going to grow.

With increasing scientific knowledge and life expectancy, we will discover more diseases faster than we eradicate them. Fine-tuning our scientific “vision” will allow us to see nuanced differences between conditions. Our increasing reliance on genetics for diagnosis and treatment will further personalize the lens through which we see conditions.

Me and the orphans

I have two rare diseases (sometimes known as orphan diseases), not related to each other. I was diagnosed with the first at age 6 and the second at age 15. Though eminently treatable (compared to many other conditions in the rare disease database) they do have a daily impact on my life.

That said, I consider myself lucky: lucky to have been born into a family that took my symptoms seriously, that sought the best treatment, and that could afford to pursue those therapies. I’m fortunate to have found a life partner who took it upon herself to learn more about these conditions than I know, and to stand patiently by my side as I continue to confront them in adulthood. She made the diseases “ours,” not just “his,” and that alone makes me confident I found the right person for me.

Coping strategies

In 1997, I set up a support group for one of my rare diseases. It’s an endocrine disorder with a relatively simple treatment. Untreated or undiagnosed, however, the symptoms can be insidiously devastating. Caught early, and treated reliably, the patient can have a semblance of normalcy. Otherwise, the disease becomes as much a psychological one as a physical one. The support group I set up was online: the Internet, it seems, was made for connecting just my kind of people together.

Today that group has 1700+ members, and I’m not very active in it as I once was. But the traffic on it is as vibrant as ever. Read the messages and you’ll see complex patterns: lots of similarities, but lots of differences, too. The disease is the same from person to person, but each one is equipped differently to cope with it. They internalize it in different ways, and use it to magnify their insecurities, or obscure their strengths.

For many members, the mere existence of a support group is therapy enough. In the early days, most of us expected to go through this condition alone. The doctors that treated us generally hadn’t heard of the condition, much less treated other people with it. With a support group came sympathetic voices, empathetic ears, and myriad information and advice.

Everybody’s got something

When I first set up the group and still watched the traffic on the mailing list I felt a strong bond with the other members: we share so many life experiences. And yet, I couldn’t help but feel that each of us was dealing with a different disease. That may have been the moment when I adopted “everybody’s got something” as a sort of motto, incorporating it into the philosophy of my early adult life.

It is about as close to compassion as I get, though not for lack of trying. No doubt compassion is hard work, but it seems as most people aren’t even trying any more. I can’t say whether people are feeling less for each other, but I can say that people aren’t doing much about it. I hope this doesn’t come across as cynical ramblings of a man with a few years’ experience under his belt. Daily interactions with most strangers reveal a stark lack of compassion. Daily accounts of global news show this playing out writ large.

The rare disease is a double-edged sword. On the one hand, the increasing specialization and customization of medical conditions implies a greater focus on “me”. As people are confronted with increasingly individualized conditions, where they may never meet anyone else with the same one, they are out of necessity turned inward. Each person faces his or her own natural disaster, not one that affects an entire community.

On the other hand, people with rare diseases realize that they aren’t alone. They see what I came to see: my demons look and act differently from yours, but they are no less significant, relevant, or impactful. It can be easy to dismiss one’s own plights (as my peer group does frequently appending tweeted complaints with “#firstworldproblems”) but plight is plight. Just because someone else is suffering from something, perhaps more devastating or more debilitating doesn’t make my suffering less important.

And in the context of me in my life (or you in yours) obstacles and challenges can’t be compared to those of another. It is this, the emergence of unexpected challenges in unique contexts, that gives us our united front. It is in this confrontation we find our compassion for others. Whatever I’m dealing with, you’re dealing with something equally complex, equally challenging, and equally consequential.

My rare diseases have taken much from me. But what they’ve given me is a perspective that I doubt I could have gotten elsewhere. That said, you don’t need a rare disease to have this perspective. Everybody’s got something, and not just a medical “something”. That fact doesn’t diminish what you have — the challenges in your life you don’t get to choose — but don’t let your own challenges distance you from other people. As we increasingly confront different things, we need compassion more than ever to cope, to make sense, and to heal.


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