Posted by: eramys | November 10, 2011


  I am disabled. It took eighteen of my twenty years of illness to decide that.

  I first became ill when I worked at Cambridge University Library. I was working in a dark bookstack. It was silent and I thought I was alone. A young girl, just out of school and who had recently started working there, thought it would be funny to creep up behind me to make me jump. She grabbed my lower back so hard that she effectively punched me with both hands. I immediately had incredible pain and could hardly walk. I had to go home in a taxi. I don’t hold any grudges; yes, it was a stupid thing to do, but it wasn’t her fault my body reacted in the way it did.

  I went to my GP, who was less than sympathetic and simply told me to go home and rest. I did that for a week but when I returned to work I was still in a lot of pain and had trouble walking. At first I counted the days, thinking I would recover. The days turned into weeks and then months. My GP, still unsympathetic, sent me to the hospital several times where I had numerous tests, each more unpleasant than the last. I even had something radioactive injected into me for a scan. None of the tests showed anything. The doctors told me various things such as ‘You’re oversensitive to pain’ and ‘You should go away and get really fit’. It was implied that I was imagining it. I even had one doctor who told me to ‘Go away and think about the children in Bosnia’.

  I had to buy my own walking stick. That was a big step and at first I felt embarrassed using it. I didn’t think of myself as disabled though; I could still walk, albeit with pain. Eventually the library sacked me because I had so much time off for my ‘imaginary illness’. I then had a series of tussles with the DSS, trying to convince them that I couldn’t work. It wasn’t helped by my unsympathetic GP who thought there was nothing wrong with me. 

  The months turned into years. I stopped counting how long I’d been ill for. I started to believe the doctors who told me nothing was wrong and I started to think I was going mad. I still used the stick and used to enjoy walking long distances, even though it made my back and hips incredibly painful. I began to think of myself as semi-disabled, even though there was apparently nothing wrong with me.

  The turning point came when I developed M.E. and my new, more understanding GP sent me to the M.E. clinic at Peterborough. The doctor at the clinic told me I had fibromyalgia. The way he said it I think he assumed I’d known that for years. I hadn’t and it was a great relief to finally have a diagnosis and to realise that yes, there was something wrong with me and no, I wasn’t going mad. 

  For a few months I was totally housebound with the M.E. It was awful. I felt trapped. I couldn’t even nip round to the local shop for a bar of chocolate if I wanted one. I had to rely on my mum to get all my shopping. I never saw anyone and never got any fresh air apart from through the window. 

  After a few months, I got a wheelchair (which I had to pay for myself). At first, I felt embarrassed using it. It’s like being a child in a pushchair again. Then I realised that I had some of my independence back. Once a week my mum, would come to take me out in my chair. I wasn’t well enough to go far, but oh how wonderful it was simply to go to the shop! I got fresh air, I saw people, trees, flowers, cars, dogs and all those little things you take for granted when you can go out whenever you want. What’s more, I could choose my own shopping.

  Then, after a few months more, I got a mobility scooter. It’s so liberating to be able to go out whenever I want, without having to rely on my mum to push me to places. I’m not always well enough to go out, but the scooter sits there in a corner of the sitting room like a security blanket, telling me that I’m independent and that if I want to go out, I can. 

  It was when I got M.E. that I finally started to think of myself as disabled. Not in a negative way, it’s just part of who I am. When I first became ill, I didn’t know much about disability. I suppose I thought of a disabled person as being helpless and wheelchair-bound. I know a lot more now, and I realise that there are all kinds of disability. Some people prefer not to think of themselves as disabled, just ill, and that’s fine. It’s a personal choice. Me, I quite like it. I’ve got a blue badge, I get discounts at the theatre and often people go out of their way to be nice to me. 

  I am disabled, but I am still me.


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