Down the Rabbit Hole…

For as long as I can recall, I have known that I was different than the people around me. I knew that my body did things that other people’s bodies didn’t. Things would come up in conversation and I would be like “Oh, you can’t do that?” I remember being very young when this first happened to me. It has happened more times then I can now recount. But some of those things were realizing that others couldn’t put their feet behind their head, other people didn’t fall several times a week, constipation wasn’t normal, neither was vomiting and other people felt hungry.

I can only recall a single day in my life that I had no pain and it was so strange to me that I found it disconcerting and unsettling. In fact, it took me a while to figure out that nothing was wrong, but rather that something was actually right and I just wasn’t used to it.

Because of all the weird things that my body does, I complained a lot as a kid. I grew up hearing adults tell me that I need to complain less and that I was lying about how my body felt. It was frustrating and scary to having no one believe that my experience was real. As an adult, I started going to doctors, believing that I would finally discover what was wrong with me. Why did I vomit almost daily? Why did I always hurt? Why did my joints slide out of place?

But the doctors didn’t have any answers for me either. They didn’t mean to, but it became a serial gas lighting. Each doctor would run a handful of tests and then assure me that there was nothing wrong with me. But I knew that something was wrong. I knew that I wasn’t normal. I went to various specialists and got the same answer. My family told me I was a hypochondriac and that I needed to spend less time focused on my body. A message I had received since I was a child.

Thing is, that there was something wrong. I was born with Ehler’s Danlos Syndrome (EDS), a genetic disorder that weakens the connective tissues of your body; effecting your whole body. Because no one believed me when I reported symptoms, I went with out this diagnosed until I was injured. My right arm was dislocated with a 6 inch separation of the joint without tearing tissues. This led to a physical therapist working with me to assess me for joint hyper mobility. That assessment led to my EDS diagnosis.

However, I wasn’t given any education about the diagnosis. I was told that it meant that I had hyper mobile joints that were unstable. I shrugged that off. “Tell me something I don’t know!” I thought. So, I kept going to doctors for all my other odd symptoms and kept getting told that I was normal or that nothing was wrong with me. I reached the point that I began to believe that I was delusional.

I fell into the rabbit hole. I was suffering and I wanted it to stop. I was willing to do anything to make things even a little bit better. If that meant that I was crazy and had to take medication, then so be it. I just wanted to find some kind of relief. I was seriously considering taking anti-psychotics for somatic delusions that I didn’t have. I was lucky. I was talking to a neurologist who picked up on the fact that my vomiting was because of abdominal migraines. Something that I had never heard of before. She heard me and gave me hope. Giving me the diagnosis of abdominal migraines and giving me treatment that was amazingly effective was the single most life changing event in my life. She will never know how she saved me that day. Because of her, I discarded the idea of being somatic and began again the crusade of finding real answers.

It could have easily played out very differently for me. I could have gone into psychiatric treatment that I didn’t need and it is difficult to say where that road would have led me. But I find it terrifying that I had reached a point in my life that I had doubted my very grasp upon reality because I was not being taken seriously as a patient. And I am left wondering how many are diagnosed as somatic when there is really something medically wrong with them.

The medical field must do better. Doctors, nurses and other medical providers do not have all the answers and their patients know their bodies better than anyone else. People cannot be dismissed. Their patients cannot afford the arrogance of them saying “if I cannot find anything wrong with you, there must not be anything wrong.”

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