“At least you have your health.” It’s a phrase we use when things get rough, and for most, it’s an easy reach. But what if your health, that bottom line, drops out at 28? When you’re young, active, successful and happy, and your life turns into an episode of “House” overnight? What do you do when you become a medical mystery? As one friend put it, “you fasten on your seatbelt.” And so that is what I did.
For anyone who loves to play outside in the North Eastern United States (and now a variety of mid-western states), I sure hope you keep reading. They tell me my story is typical of someone bitten by a tick (carrying Lyme disease) who was not lucky enough to have the disease caught and treated immediately. I now understand this disease to be one of the most controversial and under-funded diseases in this country.
Which is why, 3 years ago, I found myself often staring at confused physicians’ faces, making frantic phone calls home, asking strangers to bring me to the hospital, missing trips, losing friends, jobs, and at times my sanity. A medical mystery I was, although they were able to initially diagnose me with a syndrome called Postural Orthostatic Tachycardia Syndrome (POTS)–a cluster of symptoms often induced by diseases like Lyme. As I learn more about Lyme and its chronic/undiagnosed sufferers, I find that this kind of hell is, in fact, somewhat typical. For a disease that the CDC claims has “increased 25-fold’ since 1982,” this typical should make many of us very nervous.
The story of Martha Conan makes my struggle look like a walk in the park. Martha spent 12 years trying to solve her own health puzzle, picking up misdiagnoses like ALS and MS along the way. “For a long time, I did think it might be Lyme, but no one believed me or knew what to do with me. When I finally saw the positive test results, I cried. I was angry, and I was ecstatic. I was right” Conan explains. There are so many lessons to take away from this kind of experience. But among the biggest is this: as patients, what can we do to help ourselves when our health system fails us?
Martha and I had similar experiences: we got mad (we were taught to expect real results from our health care system) but we also got informed. And because knowledge is power, it has made a huge difference in our progress. We are both gluten free, drink only on occasion, eat organic, and understand the value in vitamins to supplement our health. When you are someone with an undetermined illness, knowledge isn’t just power. Knowledge can mean your freedom from pain. Knowledge is everything.
The controversy and lack of aid for Lyme disease is far too complicated to delve into here. Because there is only so much we can do about it now, we can choose to look at it as an example of what health care really is today–still young, messy, and not what we had hoped. We can forge ahead, however, and control some things; our attitude, diet, lifestyle, and knowledge-base. Life is 10 percent what happens to us and 90 percent how we react to it, even when you’re a medical mystery.
Sarah Edwards is a health nut, advocate, and crusader. With a recent MS in Health Communication, 8 years in Health Program Management, a side Health Coaching business, and her personal experience, she has developed an innate passion for not only health education, but also patient engagement. She believes we can control at least some of the outcome of our disease through knowledge, lifestyle, diet, and physical activity. It is a concept all patients should consider and one that Modern Medicine often fails to teach. Let’s teach ourselves.