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Recently, I was described by a friend as “the healthiest looking sick person” they knew. It was meant as a compliment, and I thanked them. I may look like a fit and well twenty-two-year-old woman, but in actuality, I am living with a disorder that consistently causes pain and hinders my life.
It wasn’t until I started high school that I began to experience symptoms that changed the way I have to live. My joints began moving in ways they should not. Despite the caution I took with my movements, my joints did not stay in place. I became used to having to pop my shoulders, hips, knees, and fingers back into place. At the time, I did not know that this was something unique. I was under the impression that everybody’s joints hurt constantly and popped in and out.
When I raised my hand one day during class, my shoulder made a loud noise followed by a moderate amount of pain. My shoulder was dislocated. I told my teacher, “I think I may have dislocated my shoulder.” After a very concerned and confused look, I promptly was sent to the nurse’s office. On the way there, I felt around my shoulder and could tell it was not in a normal position. I winced as I popped it back into place.
When I arrived at the nurse’s office, I explained what had happened. She examined my shoulder. “It doesn’t look dislocated. What are you talking about exactly?” she asked. I replied saying that I had already pushed it back into place.
“No, I think you’re mistaken. If you had dislocated something, you would be in much more pain. You would be crying,”
I said, “No, really, it happens all the time. Look.” Then I demonstrated by pulling on my arm, dislocating my shoulder, and once again, pushing it back in place. She looked horrified. That was the day I learned my body was not normal.
I saw three or four different physicians within two weeks. I was passed from doctor to doctor because nobody knew what was wrong. I was told I must be exaggerating the severity of my pain. I was told my illness was in my head. I was repeatedly dismissed. Yet, my body was deteriorating.
Finally, after two years and visits to six specialists, a geneticist diagnosed me with Ehlers-Danlos syndrome (EDS). EDS is a genetic disorder that affects the connective tissue in the body. Connective tissue is the glue that holds joints together, and it does many other important things to make a person functional.
Every day I wake up in pain. I have spent many days in bed because it hurts too much to move. My mobility is heavily compromised. Sometimes my limbs feel like blocks of cement. I may need to wear a brace on my knee, wrist, and elbow, walk with a cane, or even use my wheelchair. It seems that my body hates me. I hate my body for not working right.
Now, I have eleven different specialists to help me manage my symptoms. Truthfully, they are still trying to figure out my condition. The days when my symptoms are manageable are my good days. These are the days when I can walk, stand, and do the things that make me more than just my diagnosis. On those days, I can play the piano, go for a walk, hold a brush and paint a picture, or visit friends. Those are the good days.
I have learned that my flare-ups will come and go. I will have more good days. Currently, I have been able to return to college and become involved in things that I am passionate about, like advocating. Ehlers-Danlos syndrome has cost me many days of my life, but now with experience and knowledge about my disorder, I am confident I am going to live and thrive.
In the meantime, I am thankful for my good days; the bad days will not last forever.Tags: Coping, dislocations, Ehlers-Danlos syndrome, hEDS, Pain, pain management
Categorized in: Stories