‘I’d lock my­self in my room and cry’

Friday - - Living -

I was used to the bro­ken bones and the hos­pi­tal staff knew me well. From the age of five I’d had more than 20 breaks. I’d trip over my feet, fall off a curb or catch my leg on a ta­ble and be back in hos­pi­tal get­ting another cast for yet another bro­ken bone. Even brush­ing my hair could cause a frac­ture in my arm. I was also dou­ble-jointed in ev­ery joint in my body, which left me in con­stant pain.

My legs even­tu­ally be­gan to bend in­wards, which meant I had to learn to walk again. The GP and my lo­cal hos­pi­tal, The Princess Alexan­dra in Har­low, did tests but couldn’t find out what was caus­ing my pain and ill­ness. Some doc­tors even ac­cused me of at­ten­tion seek­ing and said I couldn’t be in as much pain as I was. It was like hav­ing an in­vis­i­ble ill­ness. I’d try to put on a brave face and get on with my school­work but ev­ery day I’d go home, lock my­self in my room and cry.

Around my teens other prob­lems reared their head too. I started hav­ing trou­ble go­ing to the toi­let and some­times strug­gled to empty my bow­els and blad­der.

Then one day I felt re­ally strange. Sit­ting in the liv­ing room get­ting my hair cut, I sud­denly felt sick and dizzy. “Sorry, I need to have a lie down,” I said to the mo­bile hair­dresser. “Are you OK?” she asked. “Erm… I think so,” I mut­tered, stum­bling into the next room. Sud­denly it all went black. A few sec­onds later I woke up on the floor. “I think you’ve fainted,” my mum said, gen­tly help­ing me on to the sofa.

It was the start of reg­u­lar faint­ing episodes. I’d pass out at school, at home or even at the hos­pi­tal. I dreaded it hap­pen­ing be­cause when I came round and looked up at strangers’ faces all gath­ered around me I’d be so em­bar­rassed. What was wrong with me? One minute I’d be nor­mal then the next I’d be bedrid­den with joint pain or black­ing out. Still noth­ing showed up on tests.

By the time I was 18 I was de­pressed. My ill health was ru­in­ing friend­ships and re­la­tion­ships. Peo­ple couldn’t un­der­stand how one day I’d be en­joy­ing my­self with them and the next week I’d can­cel plans and be bedrid­den or in a wheel­chair with a joint prob­lem. Some peo­ple thought I was putting it on. Un­able to cope, I went off the rails.

“Where are you go­ing?” Mum would ask as I tried to slip out the door at night. “Just out par­ty­ing with friends,” I’d say. “Jade, I worry about you,” Mum said. “You’ve been out a lot and each night it’s ended in A&E in hos­pi­tal with a bro­ken bone.”

“I’ll be OK,” I said, slam­ming the door. But within hours I’d be call­ing her. “Mum, I’m sorry but I’m in the hos­pi­tal. Can you come and get me? I’ve bro­ken some­thing again.” She’d sigh but she’d al­ways come and get me.

I was so des­per­ate to fit in I was risk­ing my health and stress­ing my fam­ily. I started to have coun­selling to deal with my prob­lems and that gave me the mo­ti­va­tion to seek help again. My GP re­ferred me to a new spe­cial­ist at Ad­den­brookes Hos­pi­tal in Cam­bridge. In his ex­am­i­na­tion he saw how hy­per-mo­bile my bones were and how stretchy my skin was, and within 10 min­utes he di­ag­nosed me. “You have Eh­lers-Dan­los Syn­drome,” he ex­plained. I had never heard of it, but he told me it was a con­nec­tive tis­sue dis­or­der caused by a prob­lem with the

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