I was doubted for so long that I started to wonder if the pain was in my head

Posted April 30, 2020

jinger's story

It took 35 years.

I did not learn I had classical Ehlers-Danlos syndrome (cEDS) until about 3 years ago at the age of 35, despite that my symptoms have been present my entire life. My mother started taking me to the doctor when I was four, she was concerned because I was not growing or gaining weight. I slept more than other children did, and I was constantly complaining that my legs hurt and that my body ached all over. From the age of four to the age of seven, my mother took me to doctor after doctor. She took me to specialists who ran test after test, and they found nothing to explain my symptoms. 

Eventually, my mother was told that I was simply tiny and always would be. As for the sleeping and complaining of pain, she was told that I was just a lazy child, and the pain was just from me growing (despite that, I was NOT growing or gaining weight). I eventually just stopped saying anything about the pain, and my mother accepted the answers the doctors had given her.

I was fifteen before anything was said again. It was when I stepped out of the shower one night and I heard a loud pop in my right hip, and pain shot through it. My mother took me to the hospital, and I showed them how my hip was moving in and out of the joint. Again, my mother took me back to the doctor; from the age of fifteen to seventeen, we repeated the same process we did when I was a child. We got the same result. However, this time my mother was told that my pain was psychological. Again, I learned to stay quiet about my pain because no one believed me anyway.

Life went on, and at eighteen I joined the navy. During boot camp, I realized that my legs would throb after running PT despite the fact that I weighed only 94 pounds, and I was in good shape. The pain in my legs, my body aches, and my fatigue were chalked up to being in boot camp. After all, we were running every day, and we did not get much sleep. Everyone was tired, and everyone was sore. So, it made sense that I would be sore and tired. The problem is after boot camp everything just kept getting worse.

I thought after boot camp that I would get back into a normal routine, I would start getting some sleep and everything would be okay. That was not what happened. During my military career, the pain in my legs continued to intensify. It also spread from my legs, into my hips, and up into my lower back. I did everything I knew to do, and everything just kept getting worse. I started sustaining major injuries. My ankles would roll and sprain. My knees would lock up. My shoulders started hurting. The medical team at my command started making fun of me. I was labeled a hypochondriac and accused of just wanting pain pills, and I was once again told that the pain was all in my head. At this point, I gave up, and I actually began to wonder if I really was crazy and if I was making this all up. I left the service after 8 years.

I stayed quiet and tried to ignore the pain in my body for many more years. I was tired of being laughed at. I was tired of being labeled all these things, and frankly, I was almost convinced that it really was all in my head. Until I was talking with my sister one night in 2017. She showed me how she could bend her thumb to touch her arm and asked me if I could do it as well. Obviously, I could. She then proceeded to go through the Beighton Scale with me. Sure enough, it was a nine. Only after we went through the Beighton Scale did my sister tell me why she was asking. She had spoken to one of our cousins that we had lost contact with about 20 years prior. Our cousin had been diagnosed with a condition called Ehlers-Danlos syndrome, and she believed we had it as well. 

When I finally received my diagnosis, I felt vindicated. It explained so much. Now I am learning to live with EDS. It still hurts, and it is not easy, but at least now it has a name. At least now, people cannot just dismiss me as being crazy.

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