In medical school, doctors are taught the saying, “If you hear hoofbeats, think horses, not zebras.” The rare and unusual diseases are exciting to a new doctor, but they will most likely see the same ailments over and over again. They will see horses, not exotic zebras. It was only a few years ago that I discovered I am a zebra. I thought I was just a really clumsy horse who got injured a lot. When my teenage son started exhibiting similar symptoms, it was time to seek out a better answer than just “I’m a horse with four left feet.” Through a serendipitous series of events, we were both diagnosed with a complex illness called Ehlers Danlos Syndrome, a rare, genetic connective tissue disorder that affects the production of collagen, the building block of just about everything in the body. Ehlers Danlos can cause a wide array of seemingly unrelated health issues, including joint pain and damage. Because of that med school saying, the Ehlers Danlos community adopted the zebra as their mascot.
Getting diagnosed with a chronic, complex illness requires a change in mindset. I had always looked at every surgery as the one that would “fix me.” The diagnosis of Ehlers Danlos meant accepting that there will never be a fix, but it didn’t mean giving up. I’ve always been a “go hard,” “play through the pain” kind of girl. In a leg brace from hip to toe and on crutches a couple weeks after surgery, I was teaching all day and spending my evenings running around a theater doing costumes for a high school production. I’ve learned some things since then.
- Respect the pain – I always pushed through the pain in hopes of getting “fixed” faster. With a chronic, complex illness, setting off that pain response is a recipe for disaster. When you live with chronic pain, adding more pain will cause the nervous system to ramp up even more, setting up a vicious cycle. Exercise needs to be kept in a range that does not set off the pain response.
- Rest is on my task list – Rest used to be something that only happened when I finished everything on my task list. Now I’ve learned that getting enough rest and slowing down before fatigue sets in is necessary to avoid sending my symptoms out of control. Rest is at the top of my task list.
- Laughter is the best medicine – The best advice a surgeon gave me was to take advantage of my good days to have fun instead of doing chores. Chronic pain can quickly lead to depression because pain floods the brain with stress hormones. Laughter releases endorphins, nature’s pain reliever. Like rest, laughter and doing things I enjoy are on my daily task list.
- Exercise is not a competition – Exercise is even more important now, but it has to be intelligent exercise. I can’t get caught up trying to train for a marathon with my friends or trying to deadlift more than the person next to me in the gym. I need an exercise program that is designed for my body, not some cookie cutter program found on social media. I need the guidance of excellent physical therapists who can assess how my whole body is moving and responding to movement and pain, then adjust the treatment plan accordingly.
Having a chronic, complex illness does not mean life is over. It means doing things differently, thinking differently. I have to be smarter about my body. Every time Ehlers Danlos decides to attack another part of my body, I have to figure out a new game plan. My physical therapists are who I rely on to figure out that new game plan. With their help, I am learning to move better, play smarter, and hurt less.
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