Imagine your legs when you’re stood up, your knees are straight, aren’t they? Mine bend back a bit, like a flamingo and this happens every time I take a step, stretching everything, the skin, muscles, tendons and ligaments…Now apply it to your whole body. All day, every day, someone with EDS III is hyperextending, even typing this the tips of my fingers are bending backwards. And that’s why I’m in pain all the time. Some days are much worse than others, but I can’t remember a day I have been completely pain free. Then when I’m feeling a little brighter the fatigue hits me in the face with a hammer and I can’t do anything until I’ve had a nap. Or brain fog takes over and I can’t find the simplest word, for example, I asked my boyfriend to ‘close the window doors,’ because I couldn’t summon ‘curtains’ to my mind; this happens way too often. I also have horrible muscle spasms and twitches, sometimes punching myself in the face or close to. There’s a lot of comorbidities that are related to EDS but I’ll leave that piece of awesomeness for another time.
EDS isn’t the easiest condition to diagnose as it doesn’t show up on X-rays, MRI scans, blood tests or any conventional screening a doctor might send a patient for. A lot of people wait years for a diagnosis and that is really sad.
I have been in pain and living with EDS since I was 13 years old but wasn’t formerly diagnosed until I was 19. I can’t tell you how many counsellors and psychiatrists I visited because apparently my pain was ‘all in my head.’ I was depressed, suffering with anxiety and in agony, but only my family believed that my physical pain was real. Those six years whilst I waited for a diagnosis were torturous; I didn’t want to go and talk to a psychiatrist about how I was manifesting the lack of relationship with my father into physical pain, or how I was faking agony to avoid going to school to be bullied. I knew there was something wrong with me and it was much more than my mental health. Eventually, my step-dad paid for me to see a consultant and within five minutes of being in the room, my life changed. I was diagnosed with Ehlers-Danlos Syndrome.