What I learned through living with invisible disabilities
Category: Hidden Disabilities, Invisible Disability, Home Group, Disability Awareness, Disabilities
I was diagnosed with Fibromyalgia and Hypermobility Syndrome (Ehler Danlos) two years ago. I had been experiencing pain and discomfort in my muscles and joints for no reason and was so tired that I could barely function most days.
I was sent home from the doctors many times before I saw a doctor who listened to me, referred me to a neurologist and diagnosed me with Fibromyalgia; at last I had a name for why I was feeling like this.
For the first six months of the diagnosis, I just got on with it. Then it got progressively worse. At the time, I had a full-time job as a dental nurse and volunteered at weekends as a medic at a local karting circuit. I was a positive person, proud of what I had achieved and where I was going with my life.
However, when getting out of bed can wipe you out for the rest of the day, it doesn’t take long to lose your positive attitude. There is no cure for it and no real treatment to ease the condition. I had to give all that up as I was unable to function most days.
I also have to deal with comments such as “you don’t look ill” or “you can’t be disabled, you look fine”. Some days I do, other days I walk with the aid of a stick and stop regularly to catch my breath. Luckily, I’ve had wonderful support from my partner and his family. He helped to show me that everything is still possible.
I just have to do things differently. I’ve learnt how to pace my life to minimise the pain that everyday tasks can cause.
I still volunteer as the medic when my health allows and now I’m a community first responder and a heart start instructor. I may not be as busy as I once was, but I’m still proud of what I am achieving with my life.
Indra Mudie, Customer Board Member at Home Group
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