I’ve got my fair share of labels and I am often very honest and open about them and what they do to me, but I haven’t opened up about one of my diagnoses. Why? Like most people with a ‘somatoform disorder’ I have been too embarrassed, even ashamed to admit it.
When I was 17 years old, I suddenly developed a limp in my right leg. It felt like the muscles were tightening. The tightness progressed up one side of my body and into my arm. Doctors were baffled. My symptoms looked like that of dystonia, but something about it wasn’t quite right even then. I was given medication and sent away, told it would either be with me for life or possibly go into remission some day.
2 years later, the twisting (which came and went) got so bad that I was reliant on crutches to get about. Oddly I could still ride my bike. That same year, I suddenly began suffering from seizures. I was quickly referred to a neurologist who ordered a brain scan and a 48 hour portable eeg. By this point I had already resigned myself to the fact that I had epilepsy so it was quite a shock when I went back to see the neurologist to be told my results were clear! What she said next upset me although she didn’t do this intentionally;
‘Your seizures are caused by stress. They are pseudoseizures’
I just heard the word ‘pseudo’ which I understood to mean ‘fake’ and got quite offended. ‘Are you saying it’s all in my head?’ I asked, confused. She said no, but all I could think of was how angry I felt. More recently another doctor confirmed that the seizures and the dystonia were stress related but still I wouldn’t accept it.
The thing about somatoform disorders is that although the cause is not physical, the symptoms are totally real to the sufferer. A person with a somatoform disorder still blacks out as they seize, or feel agonising pain even if tests say otherwise. What I have learnt is that my illnesses are just as real to me as a genuine case of dystonia or epilepsy but that severe stress, anxiety and past traumas in my life have caused these symptoms rather than physical problems. None of these symptoms are faked by the sufferer.
The reason I still feel bad about talking about it though is because I often read stories about people who weren’t believed by their doctors when they presented with their symptoms. They too mention being told it was ‘all in their head’ then talking about the relief of finding out it wasn’t. At one point I thought I would never get that relief but now I have, because I have a somatoform disorder and I am no longer ashamed to admit it. I hope other people like me will read this and feel the courage to spread the word about somatoform disorders so maybe one day we can find a cure.