My story

My name is Clair and I'm a zebra.

I've been chronically ill since my early teens.  I was a relatively healthy child, I did well at school and enjoyed doing dance classes but when I hit puberty things started to change.

When I was 13 my mum took me to the doctors because I felt unwell.  I was exhausted and achy but didn't have any specific symptoms.  They tested me for Glandular Fever (mononucleosis) but the results were negative.  The GP put it down to puberty taking the 'spunk' out of me.

I never really got better.  At 14 I had a severe chest and sinus infection that caused a high fever, severe head and neck pain and hallucinations.  A few weeks later I told my mum I couldn't go to school because I had the flu and my knees hurt.  It was July and I hadn't suffered any falls or injuries.

I had recurrent tonsilitis when I was 15, I had achillies tendonitis twice and I became very run down with boils in my arm pits and bottom.  I felt ill all the time, I fell asleep as soon as I got home from school and it was obvious something wasn't right so my mum took me to the doctors.

I was diagnosed with Post Viral Debility and told that sometimes it takes people longer than usual to recover from viral infections, but I didn't get any better.  I went to see a neurologist who said I probably had ME.  That diagnosis stuck with me for 23 years.  No-one ever dared challenge it and as there was no treatment for it I was left to manage my symptoms on my own.

Through the years I got progressively worse.  I suffered with joint pain in my ankles, knees, hips, wrists, elbows and shoulders but the doctors could find nothing wrong.  My blood tests were all 'normal' and my x-rays were clear.  I became physically disabled, the pain in my knees and hips made it difficult to walk and I had to start using a wheelchair outdoors.  I was unable to complete my education and I was never well enough to look for work.

I suffered at the hands of doctors who didn't understand.  They thought my symptoms were all in my head but I had no psychological problems.  They thought it was due to inactivity but every time I increased my activity my symptoms would get worse.  I had severe flare ups that left me bed bound, I got so ill I was admitted to hospital as I could not stand or care for myself.  I struggled with normal activities but had to fight to get support from social services.

I felt like a medical hot potato.  No-one wanted to see me, never mind treat me.  My GP told me to give up looking for answers.  Then by accident I found out what was wrong with me.  My children all suffer from growing pains, as I did as a child.  I Googled to see if there was anything I could to help them and I came across the diagnostic criteria for Joint Hypermobility Syndrome.  It was like a lightbulb moment.  This is what was wrong with me!

I went to my GP armed with fact sheets to ask if I had JHS.  She told me she didn't know anything about it and to ask my rheumatologist.

My rheumatologist told me I had Fibromyalgia.  He gave me a leaflet which described people with hypersensitivty to pain, insomnia and depression - the exact opposite of me!  I questioned the diagnosis.  I'd already tried the treatments (tricyclic antidepressants, exercise and Gabapentin) and they made me worse.  the rheumatologist insisted I had Fibromyalgia.

I asked him about JHS again.  He examined me, told me I wasn't hypermobile but he was amazed that I could put my hands flat on the floor, especially considering I'd just got off my mobility scooter and hobbled across the room with my walking stick.  He wouldn't give me a straight answer and referred me to a physio.  She didn't think I had a connective tissue disorder and just gave me an exercise to strengthen my elbow, so I came to a dead end.

I don't give up easily.  I thought Joint Hypermobility Syndrome was a real possibility so I read everything I could about it and I made a private appointment with Dr Hakim at St John and St Elizabeth's Hospital.  Dr Hakim was brilliant.  He listened to my concerns, he explained things in a way I could understand.  He examined me, gave me a diagnosis of Joint Hypermobility Syndrome and best of all, he wrote up a treatment plan.

I finally found my identity.  I was a zebra.  A medical rarity.  Doctors are taught "When you hear hoofbeats, think of horses not zebras" but that doesn't mean zebras don't exist.  The more I read the more I began to realise that zebras aren't as rare as the medical profession think.  There are many other people like me who are misdiagnosed with other conditions such as ME, Chronic Fatigue Syndrome, Fibromyalgia and psychological disorders.  

In this blog I hope to share my thoughts and experiences.  I'm not qualified medical professional and I can't give medical advice but hopefully I can provide some food for thought.