By Orkney Fibromyalgia Sufferer
Lazy? Wish that I was. Laziness can be cured. Fibromyalgia cannot.
Fibromyalgia isn’t a choice. Nor is it an act designed to gain sympathy or attention.
If I was going to “pretend” to be anything. Don’t you think that I would choose to be a fit, healthy person? , successful and able-bodied with the ability to have an active lifestyle, and attend every social gathering or event that I am invited to.
Why would I or in fact, anyone choose to have a life spent in the Dr’s waiting room, at specialist appointments. Dominated by a ridged timetable of rest, having to consume multiple medications every 4 hours. Isolated from the world, confined to my bed or the couch. Removed from daily life. Watching it all pass me by. Missing that Wedding, Birthday Party, special occasion or just being able to have a coffee with friends.
The assumption is. That somehow because you can’t see it, it mustn’t be real. We can’t see stupidity either but we know it exists.
There is an entire index of invisible conditions or disabilities. In fact, 96% of illnesses are invisible. Yet only some are stigmatised against. Neurological, Autoimmune, Chronic Pain and Mental Illness for example.
Why is it that we have to be seen in a wheelchair or using crutches to be believed? And even then, because we might not need to use these every day it reinforces in people’s minds that “we must be fakers” because one day we are seen using a walking aid the next we are not. It must be true, you must be right after all. I mean she looks ok, there is definitely nothing wrong with her.
When I was first diagnosed 10 years ago, I had things like that said to me a lot:
You look fine
You can walk, you can’t be in pain
People with ME/CFS and Fibromyalgia can’t get out of bed and you can, you don’t have that
You manage to put make up on, that means that you aren’t ill
All these types of prejudices are why I rarely tell people I don’t know well or have just met about my multiple chronic life long conditions.
Tell me what does disability look like?
I feel that there is a real need for the worldwide disability symbol to change. The image of a person in a wheelchair isn’t inclusive of the majority of the disabled population.
More than 1 billion people in the world are living with some sort of disability, according to a new international survey. That’s about 15 percent of the world’s population, or nearly one of every 7 people.
The numbers come from a joint effort by the World Health Organization and the World Bank
Out of the 1 billion, only 65 million actually use a wheelchair.
So again I ask what does disability look like?
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Firstly – I often think that those who don’t accept the ‘invisible’ conditions should try spending a day feeling this way – no – a day is too short a time – they’d know it was going to end soon – let’s say a week.
Secondly – when I was very ill, friend Andrew said ‘People can see a broken leg, they can’t see a broken spirit’.
Feeling rough, in various ways, all the time, can wear you down – and I haven’t felt well since October 2012 when the medics started me on massive doses of what turned out to be harm-full medication.
Thirdly – I don’t see myself as disabled – I know that I’m not able to do a lot of things – but I kick against the labels.
You ask what does a disabled person look like? My first response to that was, I’d ask folk to look in a mirror – who is entirely ‘able’?
We’re human – strengths and weaknesses – some can be seen, some can’t.
How many major sports people are revealing that a troubled mind lies in that ‘perfect’ body.
And how many wonders have ‘troubled’ minds produced, through the ages?
I’ll stop wittering now!
I kick against labels too. But the fact is that Fibromyalgia is a disability whether you choose to accept it or not. When you use the word “able” people think that able is a choice. Something which you can choose to be. The word disability means something different entirely. Nobody chan chooses to be disabled. It’s something that you are either born with or happens to you. Not something that is chosen. Or decided.
What happened to me, and how I am, definitely wasn’t, and isn’t, a choice or a decision.
How I try to deal with it – is.
No doubt about it.
My life would be very different if I didn’t consciously, and constantly, make those choices and decisions about how to at least attempt to live it.
I’m beginning to repeat myself, so I’ll stop
You are right about that. We do have a choice of how we react to it. If I didn’t fight against it, all my life would be spent in bed.