Ever since I can remember, I’ve known that something about me wasn’t right. Unlike me, my sister never got exhausted by simple tasks and my friends never complained about how much it hurt just to move. My joints slipped in and out of place for no apparent reason, causing excruciating pain. Eating made me nauseous, and I always had a headache. If I stood for too long, I’d get dizzy and pass out. My hands and feet were always cold and stiff, and immersing them in warm water burned like fire. But every time I went to the doctor, I was told that there was nothing wrong with me.
The first diagnosis I got was patellofemoral pain syndrome – a.k.a. runner’s knee – which was ridiculous because I was in far too much pain to run. Yet, the tests and the scans came back normal, so the orthopedic surgeon decided it must be that.
When months of physical therapy and rest didn’t help, the doctor told my mom that I was seeking attention and that there was nothing wrong with me.
The next doctor, a psychiatrist, diagnosed me with anxiety and depression, and began medicating me. I had weekly individual and group sessions.
The next doctor, a neurologist, diagnosed me with Sensory Integration Dysfunction, because my nerves weren’t communicating correctly with my brain. I began occupational therapy, in addition to physical therapy, group therapy, individual therapy, and medication.
The gastroenterologist told me I was lactose intolerant, so I stopped eating dairy products. When that didn’t help, I went off gluten too. Then soy, then eggs, then nuts. Soon, I was down to just fruits and vegetables.
The immunologist told me my white blood cell count was a bit low and prescribed vitamin C supplements.
The sleep clinic said I had insomnia and gave me sleeping pills.
The new psychiatrist diagnosed me with Attention Deficit Disorder and prescribed Adderall and Strattera.
The cardiologist said the ADD medications were causing tachycardia and told me to wear a heart monitor.
By this point, I was sick and tired of doctors. None of them helped, and I felt like I was doomed to live in pain. As a last resort, I went to one last doctor, another rheumatologist. I went through the whole routine, telling this doctor all my crazy symptoms, showing her my bendy joints, and having her feel my icy hands. When I was done, I sat back, waiting to be told that I was crazy and that there was nothing wrong.
Instead, she asked to see my arm. She pulled on my skin and then asked if I could touch my thumb to my wrist. I showed her that I could, and she smiled.
That’s when my life changed forever. The doctor leaned forward and said the words I’d been dreaming of hearing for years: “I know what’s going on.”
Turns out, I have a rare genetic disorder called Ehlers-Danlos Syndrome. My body doesn’t have enough collagen, which is a protein that acts like glue to hold the body together. Over 80 percent of the body contains collagen, so a lack of it can cause wide-ranging and seemingly unconnected symptoms.
However, being correctly diagnosed doesn’t mean I’m cured. There is no cure for Ehlers-Danlos Syndrome, so all I can do is learn to live with it. I wear braces on my ankles, knees, wrists, back, neck, and fingers, and I take a lot of medicine to manage the pain. I’ll be getting surgery on my hips and shoulders soon, which won’t be a permanent solution but will help for a while. Eventually, I will need an operation on my heart, because the muscles are slowly wearing out. Once my legs are beyond repair, I’ll need a wheelchair. I can’t have children, and I’ll be in pain forever.
But I’m not crazy, and now I know the reason I have felt sick all my life, so I’m glad I got diagnosed. Even though my life as I knew it is over, I know now what I’m dealing with and what to expect. Plus, I’m super flexible, and I’m getting pretty good at yoga. I’ve even learned to walk up and down stairs with crutches, which is a real accomplishment.
This piece has been published in Teen Ink’s monthly print magazine.