2005-11-11

when your unhappiness is largely down to being misunderstood...

What lonely illnesses ME/CFS and FMS can be.

Recently I've received messages from quite a few sufferers who have all expressed how lonely they are. How difficult it is to live with this illness. It's difficult enough to live with the physical side of it. Feeling so ill and exhausted. Some experience the illnesses so severely that they are bedridden.

Then, add to the equation the prospect of not knowing whether you'll ever recover. That there is no universal cure. That most treatments and therapies cost money that you don't have. That you have been denied benefits. And that you're lucky if you find a doctor that actually believes your illness is real in the first place.

Then, add to that the frustration and stress that comes with the disbelief and condemnation of friends and family, who just can't see why you are the way you are. It's an invisible illness all right. And it seems that being misunderstood is just the icing on the proverbial cake.

I think most sufferers' lives would be much easier to live if they were not so misunderstood.

I am so lucky to have the wonderfully supportive friends and family that I have around me now. I am so grateful for them. But there was a time when it wasn't that way. And life was definitely a lot more stressful and difficult.

It breaks my heart to receive these sad messages from these sufferers. I can only reply and try to help them by pointing them to pages on sleepydust, to the Sleepydust Forum, or to their national ME/CFS or FMS Association.

This is my little way of helping my fellow sufferers. Information and support is a start - and while I'm severely affected I doubt I can do much more. But there is so much to be done. And it breaks my heart to know that much of their unhappiness is largely down to being misunderstood.

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