For me living with Ehlers Danlos Syndrome and POTS has been like living with a dirty little secret. I have always been known as the clumsy one, as the one who doesn’t work hard enough, or the lazy one. The person who seems too lazy to get a job alongside full time studies, or the 1 person in her year that couldn’t seem to manage the 25 minute walk into music college and the 25 minute walk back.
It was easy to go along with this. To take these assumptions as reasons of my falling short alongside those around me, but as the years have gone on I have been forced by my body to admit that something else is going on.
I have lived with chronic pain since the age of 14. It started on a music course – 5 days of playing, and I suddenly found that I couldn’t even grip a pencil, let alone cope with holding a bag or playing my instruments without the (now familiar) feeling of nausea that accompanies that sort of pain. Suspected repetitive strain injury in my wrists quickly became neck pain, pain in my shoulders and arms and back pain. I had issues with my TMJ (jaw) from the age of 12 – it would click and clunk, and lock for months at a time – I regularly had periods of time when I couldn’t shut my teeth together, and other where I couldn’t open my mouth more then a centimetre or two. Accompanying this was severe insomnia (which had been going on since the age of 7, and is still with me almost 21 years later), clumsiness and joint hyper mobility – sitting with my feet behind my head was a favourite party trick of mine!
As the years went on, the pain became my normal. It never crossed my mind that anyone had a life without pain so I became adept and carrying on regardless and hiding these parts as best I could. I battled for 7 years to get through a full time degree at music college, and it was only really in the last couple of years of my studies that I began to accept that I had a problem. By this time my pain and other symptoms had reached new levels. I often had periods of time where I could no longer feel my fingers. I had rehearsals and practice sessions where my joints popped so painfully that I burst into tears or ran out to go and lye in a room alone and cry on the floor. I was constantly dizzy and out of breath (what I now know to be Postural Orthostatic Tachycardia Syndrome), and constantly exhausted.
It was in my final year that my life began to be put on hold. For the 3 years previously, I had found a love of dancing, and was in classes for 15 hours a week – it was where I felt free, and where I was at peace with myself. However I hit a wall. My pain became so severe that I was waking up 4 times a night in agony, and was needing to pop joints back into place numerous times a day. The dancing had to stop if I had any chance of finishing my degree, and sure enough with a lack of exercise to strengthen my already weak/hyper-mobile joints, I deteriorated faster then ever.
A year after finishing my degree I am sat in a room alone surrounded by mobility aids, and a collection of crockery that I just don’t have the energy to clear away. I am in the midst of seeing numerous specialists, and am building a collection of labels that I would rather not have. 2 years ago I was still managing the odd dance class – and now I am reliant on a blue badge to get me around, and am increasingly reliant on friends and family to help with basic home and personal care.
I don’t know how to be an ill person. I don’t know how to shake the expectations I used to have of myself, or to build a life that integrates being ill with the person that I want to be. I do know that the only way through this will be to find a way to be open and honest with those around me. To accept that for now, even tho I have the body of a (very bendy) 90 year old, I am still a 28 year old woman with the same stubborn determination that I had many years ago. I may not be well enough to achieve the many dreams I used to have, but I’m not out of ideas just yet.