In medicine, there's a saying: "If you hear hoofbeats, expect a horse, not a zebra." In other words, doctors should look for more common, ordinary causes of problems rather than rare, exotic ones.
Well, I am a zebra, dammit. Are you, too?!? Maybe "You're too young to be having this problem". I got that through my twenties, as I battled hammertoes and spinal degeneration, plus the onset of Sjogren's Syndrome. Or perhaps "You're not our typical patient." I got this one recently at an OB/GYN office. I'm going to be a high-risk pregnancy (if I do get pregnant), and they wanted nothing to do with me. Or perhaps, even "Wow, I haven't seen these kinds of medical problems since I was a medical student." (Got that one at the same ignorant OB/GYN office.)
There are lots of people in the world who have something weird and not so wonderful. I have Marfan Syndrome, which is recognized as a rare disease by the National Institutes of Health's Office of Rare Diseases. It affects approximately 200,000 people in the USA. However, there are much rarer diseases that affect 1,000 people worldwide, and even rarer diseases that involve only 20 or 30 people around the globe. In my book, these rare diseases make you a definite zebra!
Other people get something at the wrong age... spinal degeneration when much too young, food allergies when much too old, etc. These time-warp patients are definite zebras in my book, too.
Other people have such a unique combination of problems that they are truly one of a kind. In addition to having the rare disease Marfan Syndrome, I have Sjogren's Syndrome, an autoimmune illness that affects the moisture-producing parts of my body. According to most doctors, it's nearly impossible (and highly unlikely) to have both syndromes. My genetics doctor at Johns Hopkins University tells me he has one and only one other patient who has both a connective tissue disease (like Marfan Syndrome) and an autoimmune disease. And he's a doctor at the best hospital in the United States. If he hasn't seen it, it probably doesn't exist. It makes me feel all warm and fuzzy inside to realize that I'm a statistical anomaly!
If you are out on the fringes, like me, do you embrace your inner zebra, or play down your stripes? Many chronically ill patients want to play down their worries and concerns. I'm no exception. I've been having occasional chest wall pain, and I've been trying to write it off as common, everyday indigestion. But in my weird, wonderful medical world, it could be something more severe. I need to risk overreacting and get it checked out, because it could be heart-related or neurological in nature.
Do you love your own stripes? Are you willing to educate and enlighten every medical professional you deal with about the intricacies of your medical situation? Are you willing to consider that a small symptom could be related to one of your big medical problems, and get it checked out properly? Are you willing to accept that you, like all of God's other creations, are really, truly unique? (Especially from a medical perspective.) Don't be embarrassed or ashamed. Love your stripes and wear them proudly. Remember, you are a zebra, dammit!
