May is EDS awareness month and they have asked us to share our diagnosis story. So, this is mine.
I’ve had symptoms all my life that I reported to my parents as a child and then to doctors as an adult. I kept being told nothing was wrong with me. I knew that I was different then others. I knew that I was always in pain. I knew that I was always vomiting. I knew that something was wrong, but I didn’t have a diagnosis.
In 2006 (when I was 25) I dislocated my shoulder with a six inch separation of the joint without tearing any of the soft tissues. This was the first major clue to getting my EDS diagnosis. At the time, I was diagnosed as being hypermobile. I didn’t think much of that diagnosis. I had already known that my joints were hypermobile, so it didn’t seem that important.
Years passed and I continued to struggle with my symptoms and doctors continued to tell me that nothing was wrong. One doctor even diagnosed me as being somatic. I had begun to believe that diagnosis. What I knew for sure was that I was suffering and that I wanted to feel better. I didn’t care if that meant I was delusional. I just wanted help.
Then a neurologist evaluated me in 2013. I was there to be evaluated for a movement disorders that had been misdiagnosed as seizures (I didn’t know that then). I was very lucky, because I got an amazing doctor. She was very through. She asked a bunch of questions, including about my abdominal pain and nausea. She diagnosed me with abdominal migraines. I knew then that I was not somatic, that there were things going on with my body and I started looking for answers again.
I decided to try to look at all the pieces together. When I recalled being diagnosed as hypermobile, I did some research on it. The diagnosis he gave me at the time was hypermobility syndrome and when I looked that up, I realized that there was a lot more to it than just having mobile joints. Then the pieces started falling into place.
I went looking for someone who knew how to treat people with hypermobility syndrome and found a orthopedic specialist that also specialized in pain management. After my first appointment with him in 2015 (when I was 34) I was diagnosed as having Elhers danlos syndrome hypermobile type (EDS-H). He gave me a web site to get information on the diagnosis. Reading that site was like reading an biography of myself.
Suddenly, everything that had always been wrong had a name. It was validating. I felt so happy to finally have an answer. But I also felt angry about all the years that doctors had told me nothing was wrong. And I was even angrier that I had been labeled delusional.
I’ve had my diagnosis about six years now. Having it has changed everything and nothing. Doctors still tell me there is nothing wrong with me. But now, I know that doctors are often wrong. I know that a doctor not knowing the answer isn’t the same as being nothing. Now, with my diagnosis, I have the confidence to advocate for myself.