Claire Millross, AbilityNet's Volunteering and Free Services Administrator, explains the impact of invisible illnesses on her life
Invisible Illness Awareness Week (8th-14th September 2014) may be an American thing but I for one will be doing my best to take part, in even just one small way. Why? Because like so many of us in the UK, I have an invisible illness. Well, actually, I have 2 invisible illnesses - firstly I have Ehlers Danlos Syndrome and more recently I have been diagnosed with Fibromyalgia. Although I would consider myself to look as normal as most people, I am in constant pain and suffer with fatigue all the time.
This is why I do what I do in my work at AbilityNet. I have experienced the frustration of being too unwell to seek help when my computer breaks down - the gadget I rely on for everything from clothes shopping to keeping in touch with friends. I therefore feel great empathy with the clients I am helping - while I may not be physically able to help them myself I know that by working for AbilityNet I am doing my bit, however small.
Invisible Illness Awareness Week started in 2002 when Lisa Copen, founder of restministries.com saw so many people who felt misunderstood by everyone. She decided that everyone with a chronic illness could do with validation that their feelings were normal. And so Invisible Illness Awareness Week was launched and since then it has gone from strength to strength.
Sometimes with an invisible illness it can feel to onlookers like we are pulling the wool over their eyes but take it from one who knows, we aren’t. When we smile and laugh and seem to be enjoying ourselves, it is not because we’re not in pain, instead we smile and laugh and enjoy ourselves despite the pain.
So what do those of us with an invisible illness need?
We need understanding and acceptance. We do not need to be made to feel like we have to prove ourselves. And most importantly, we need functional tools to enable us to lead our lives as fully we can - and one such tool is our computers. This is where we at AbilityNet can help.
If you have an invisible illness and your computer is not working, please give us a call on our Freephone helpline 0800 269 545 and we will do our best to help.
For more information please see:
- Fibromyalgia and Computing - AbilityNet blog September 2014