The Invisibles

As I wrote previously, my disabilities and illnesses are largely invisible. If you met me, you may notice that one of my eyes would be staring off into the distance (over or around my glasses), and that I limp. If I had my coat off, you might notice that my shoulders are uneven and my back is wonky. All these problems I’ve had for over 20 years. I’ve been bug-eyed since I was 2, and been a limping wonky-back since I was 12. I’m not a sallow eyed vision of Victorian illness and femininity. I’m 6ft tall and, in the language of my people, ‘built like a brick sh*thouse’. But I can be knocked over and hurt very easily – being unsure on my size 9 feet.

Rather than splurge all the problems and illnesses and syndromes and medications in one post, I’m going to address them as they cause trouble, or as I have to deal with them medically – as I have appointments and similar.

But here I will mention why I can be ‘knocked over and hurt very easily’, though I am large. I have a fundamental, genetic weakness that impacted on my life before I knew of it. I was only diagnosed with Ehlers-Danlos Syndrome (EDS) when I was 21 and at University. Though I had displayed many symptoms before – scarring badly, bruising easily, spraining things, healing slowly, flat feet, Scoliosis, unstable joints- it was something completely disconnected to my connective tissue that brought the trouble to light. When I was 20 I was diagnosed with gallstones and had to have my gallbladder removed – unusual for someone my age. What was more unusual was the size of my gallbladder, which was almost a foot (12 inches). If you look at an image of human innards, you’ll see the gallbladder is pretty tiny. Mine was spread across my whole stomach – it had invaded the space where my appendix had been. So distended and odd was this organ, the doctors thought I had a tumour*, but no. My gallbladder had just stretched and stretched – full of gas from the rancid bile trapped inside – delightful. The surgeon who removed it (through my umbilicus) suggested, on examining me again, that I might have a connective tissue disorder – Marfans Syndrome or EDS – as this would explain why the ‘bladder could, and did stretch.

EDS is a Joint Hypermobility Syndrome. Hypermobility can be positive – ballet dancers, gymnasts and contortionists rely on being Hypermobile – extra stretchy in the soft tissues – in order to do their thing. Double jointed people are Hypermobile. But when you have a ‘Syndrome’ that usually means that your Hypermobility is causing trouble for you. In my case it has made my joints flexible, but unstable (floppy, wobbly)  and caused some of my joints to become too solid and stiff in order to compensate for the instability. I get soft tissue injuries easily (if someone knocks into me on the street, I’ll be in pain for days after) and such injuries heal 50% slower than is normal. I scar easily and have lumpy, keloid marks. I bruise easily, and it takes a long time for the marks to go. I have a problem with the Mitral valve in my heart (it’s too floppy and closes a bit wrong) and, as a side effect of the slow healing, I have Chronic Pain. So the above is the bedrock or foundation problem of all the other things, and something of which I was ignorant when I began developing some of my key health issues.

There are lots of types of EDS. When I was diagnosed, it was little heard of, but now it’s better known – most of the medical professionals I have met in the last 5 years know if it. It’s mentioned regularly in some of the popular GB press and has even been mentioned on things like CSI, Bones etc. Even the WCA Doctors say they know of it, but some have not really understood it. For more information:

*Something I only found out recently. My surgeon Prof. Darzi told my parents privately but did not wish to alarm me as I was very sick. Cancer runs in my family as the blood in our veins.

EDS is invisible, even if you’re naked in front of a Doctor, it can be missed – but it affects everything soft in the body (excluding the brain…). People with it can be in agony and struggling to stay up-right, and you won’t know. Pain doesn’t show. Effort doesn’t show. One day I’ll have a sign made.



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