Observations on ME

Edit: Over 90 posts for the #May12BlogBomb, wow! sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html

Observing ME from the inside and from the outside can tell very different stories. As a sufferer or carer you are acutely aware of every limitation, every pain. Many of us take great efforts to lie to ourselves about the true severity, but when it comes down to it you can’t avoid facing the limitations faced on your life. If you’re simply too ill to dress yourself, you can learn to appreciate the loungewear you’ve been in for the last week but you can’t convince yourself you were able to get dressed.

As a friend or acquaintance, you don’t see that side. On the torturous days when the sufferer wonders if they will even make it to the next morning, the outsider can only see their absense. There is no way to tell just from that the severity of the reason for it. On the days when the sufferer is as good as possible – perhaps they make it to work, or they are able to sit up and feed themselves, or able to tolerate a moments touch – the outsider can only see what they are managing in that moment. One who isn’t there all the time doesn’t see what’s going on all the time.

That’s why what’s portrayed in those surface glimpses gives such a wrong impression of what’s really going on. I only know that those around me who are suffering are truly in such bad states because I’ve been there myself. I may only speak to them rarely, and always when they are well enough for that, so I don’t see what they are really going through. I see just that but I can’t deny the reality of how awful their situation is – because I know what it’s truly like, I’ve been there. But for those on the outside, those without that intimate knowledge, what impression do they get? When you think of it like that, it’s easy to see how people jump to wrong conclusions.

They can’t know how much payback will occur from such ‘simple’ actions, how much careful planning has been expended for the possibility of flicking through a magazine. One who hasn’t seen it rarely dares to imagine the true state of a life with ME.

That’s why the job of telling people, of raising awareness is utterly vital – why those who are campaigning the best they can to let people know about this awful disease are doing such an important thing.

May 12 Blog Bomb

This post was written as part of the #May12BlogBomb for ME awareness. In tomorrow’s post I’ll start exploring some of the major reasons why those who are raising awareness are doing such a fantastic thing, but for now why don’t you join in: read about it here: sallyjustme.blogspot.com.au/2014/04/may-12-blog-bomb.html, or write your own post with the hashtag #May12BlogBomb.

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5 responses to “Observations on ME

  1. Spot on. Well said.
    I handle the issue of people encountering me (at my door: I’m housebound) while I am in my well-lived-in loungewear by giving it no mind. I know why I’ve chosen to wear that (It’s easiest to put on, and is most comfortable when I go horizontal,as I frequently have to do.)
    If they mis-read, or assume wrongly, is my problem? No, Is their problem!

    • This is true, it is their problem entirely, and not your fault at all!
      It might well be in some situations that ignoring it is the best solution. After all, we also are making assumptions about their assumptions.

      If we let society keep its bad assumptions though, nothing changes. It isn’t fair that we have to do it, but what is?

    • Thanks for commenting!

      I really hope you do it again next year, it worked so well :) thanks for putting it all together. I’ll edit my post to have that link too so people can see it easier.

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