Chasing Zebras

Medicine is a science of uncertainty and an art of probability.~ William Osler

Anyone who has a chronic illness can tell you that reaching that diagnosis was a long journey. Even the diseases doctors know the most about take a winding path to diagnosis. Imagine spending almost half your life trying to figure out what’s wrong with you. Being told it’s psychosomatic. Having doctors shake their heads and announce there’s nothing wrong with you.

This is my life. Fifteen years ago I had a doctor tell me that I needed to see a doctor who specialized in finding “zebras,” or odd diseases. For various reasons, that didn’t happen until about 6 months ago. My primary care doctor finally agreed he had met his match and sent me to a major medical center. I’ve been at this center for 5 months now, shuffling from one specialty to the next. Learning all about insurance and bureaucracy. Oh, and the bureaucracy!

I feel like we’re in the home stretch now. That elusive diagnosis may very well be confirmed tomorrow. Let’s just say that getting here has involved scores of things that no person would readily agree to unless they were desperate. I guess that made me desperate. Trust me when I tell you that there truly are some um, odd, people coming up with testing. I would really like to meet the inventors of some of the diagnostic tests (who came up with using three IV lines for three different dyes during the same exam).

Sadly, if this is the diagnosis, it explains much but there is no cure. There are definitive treatment options which is a plus as my doctors will no longer be fumbling around trying to figure out what to do. It’s not progressive in that I will die from it. But, it does get worse and the complications are high. Over 40% of the people diagnosed with this disease die from complications. Before that freaks you out, the statistics on this condition are that it occurs in 1:50,000 across the globe. There is still much to be discovered and new treatment options are being explored.

So, I may have caught my zebra. I’m borderline hopeful right now because labels are what doctors understand. Labels are what makes treatment possible. Labels are what help track progression. Think about it…you break your arm and the doctors know what to do. Doesn’t matter where you are, the treatment is pretty standardized. But, show up with cold/flu symptoms and what happens? Some testing to rule out infections and then treatment based on your provider’s informed diagnosis. Show up with vague symptoms that don’t fit neatly into a box…you probably have a zebra on the loose.

So here’s to zebras and the people who chase them. I really, truly hope mine has been caught.

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