There are a lot of posts online about how long it has taken for people to be diagnosed with Ehlers Danlos Syndrome (EDS). I was thinking about joining in as it is the helpful way to raise awareness of both the condition and the struggle that people have to be diagnosed.
However, I don’t know when I first became aware of my symptoms. For me, they were normal. I remember coming out of exams in school surrounded by friends who were telling me how much their hands hurt. My hands hurts so badly that my handwriting was virtually illegible, my pain was through the roof and I hadn’t been able to write everything I wanted to. I assumed my pain with the same as theirs and that I was weak, overly sensitive and over-dramatic. I didn’t know my pain wasn’t normal. I didn’t know what I was experiencing wasn’t ok.
I was told over and over again that I was useless at sports and PE because I was unhealthy and unfit. I assumed the pains shooting through my legs were because of this. It never clicked that it was or could be something else. I restarted dance lessons when I was 12 because I wanted to get healthier. I quickly lost track of the number of times my ankles rolled and twisted and sprained. We did a week of performances in the summer of 2000. I danced every night on a strapped up, sprained ankle. I went to school and walked around as if everything was normal. Because for me it was.
My friend’s mum was horrified and suggested I try this and that to reduce the pain. I was used to a mother who glossed over these things. To have someone treat my pain like it was legitimate and a big deal was weird. But sprained ankles come and sprained ankles go and after all, this was an intense week – I was performing every night for a full week and walking round school and walking home. All of this factors came together to explain why this particular pain was so bad.
As I got older, I still carried the baggage of being dismissed, invalidated and told I was in pain because I was unfit. It took breaking down in tears with my then partner because of the pain in my hands before I really started to realise that this wasn’t normal. That people didn’t go around in pain day after day. That people didn’t get shin splints from a short walk. That writing notes in lectures shouldn’t leave me in agony. I had lived with the pain for up to twenty years before I realised this.
I don’t know when I first noticed my pain. I don’t know when it first became a problem. All I do know is that by the time I was 22, I had finally realised this wasn’t normal. This was the start of my journey towards a diagnosis.
Unfortunately, the first step on this journey involved a rheumatologist telling me I was hypermobile but it wasn’t a problem, that I was experiencing growing pains and that I would grow out of it. He couldn’t understand why I burst into tears.
I was living in agony, I had realised that this wasn’t ok but here he was telling me that I was fine. I spent the next couple of years in a weird grey space, not quite sure if I was overreacting to my pain, not quite sure if I was being dramatic and not quite sure if I was just overly sensitive.
I am now 32 and I know that my pain is real, I have a diagnosis and I have pain medication. But I still ask myself whether I’m faking it or not.