To those who think that I am lazy or faking it….

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 doctor’s waiting room, at specialist appointments? Dominated by a rigid 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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