GAY LYON – ANSWERING A CFS SURVEY HAS A COST
This week I once again answered one of those surveys asking “What would you do if tomorrow you were well?” I did it because I know it helps put a human face on this disease. In a positive way, it shows policy-makers that we’re just ordinary people, and it lets them know that ME/CFS prevents us from doing things that healthy people take for granted. It’s designed to tug at their heartstrings, much the way the poster child did for polio.
But I find that answering that question takes a toll on me. It leaves me sad.
In the years I’ve been sick, I’ve learned not to dwell too much on the past, or to think too much about the future. I find it easier to maintain a positive outlook when I take each day as it arrives.
To ask “What would you do if tomorrow you were well?” is really rather cruel. It asks us to revisit the life we imagined we’d have, the life that this disease prevents. It reminds us of the dreams and plans we had, which we’ve had to abandon.
I feel the same deep sadness sometimes when I get a chance to visit my former life for a time. If I’m having a good day and manage to do something I used to enjoy, I find that the pleasure I have in doing it is mixed with sadness. Even something like watching travel programs or cooking shows or home improvement shows, which I used to enjoy, aren’t really enjoyable when I know I can’t actually do those things. Or visiting with an old friend, remembering the things we used to do together and the things we planned, which they now do without me.
I’m generally a cheerful person. And I work at staying that way. I find things to enjoy in my life as it is, here and now, even if they’re small things, like the way the light shines through the leaves, or how my cat bosses me around. I like to think that what my life lacks in breadth, I make up for by noticing details that give it depth.
But every time I’m asked to think about “What if…”, what if things were different, what if I were well, it makes me focus on what’s lacking, instead of what I have. And it leaves me sad for a few days, until I can forget about those dreams and expectations I had, and get back to cultivating gratitude for all that I have.
I’ll probably continue to answer the question when I think it will do some good. But I wonder if the people asking the question know the cost of answer it.
Or maybe it’s just me.
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Thanks, Gay. I don’t think it’s just you.
liebjabberings 
That’s a question that bothers me too. It’s never far from my mind, If I was well I could do this or that or all the things I see everyone else doing and all the things I should be doing that I can’t.
But lately, after a period of severe discouragement, I’m starting to look at it differently. This is the ground I’ve been planted in (as in the saying, bloom where you’re planted). It’s difficult ground, hard and dry, not rich and fertile like those good spots in the garden. But this is where I’m planted, so what can I make grow here? And what can I grow here that maybe I wouldn’t bother growing or have time to grow if things were easier?
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Bloom where you’re planted – especially if you really can’t move from there. It is a far better attitude than all the other alternatives. I try. Some times it’s harder than others.
It’s hard to not get discouraged. It takes a determined effort to ignore the commercials where ‘people just like me’ are hiking through the Grand Canyon, or having fun visiting Rome.
It takes a lot of ignoring the world.
But it can have amazing consequences.
And if not, at least you’re pleasant to live with, a major consideration. I don’t get being miserable and taking it out on others. Exactly what does that accomplish, except getting those others not to like being near you?
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It’s rather cruel actually. Perhaps the question could’ve been, “What can we do to help? (or words to that effect) Which would acknowledge the issue, rather than the one that gives the person/company/entity reading the answers a feel-good buzz. ie ‘they’ want to be just like ‘us’ therefore ‘we’ must be the societal/socially acceptable norm.
I’d put this right up there with that wonderful, ‘disabled people are so inspiring’ trope … and shoot it.
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What? I don’t get to be inspirational?
Sigh. I want to be inspirational ONLY if I do something worth it. You may admire my writing, if you like, all you like. I put a great deal of work into it, and some people like it.
But for living? When there are so many people so worse off in this world?
I try to live with what I have – and be grateful for it, rather than pine over that which I cannot do. I live in a house with central heating and hot running water!
I know I push myself too hard, given the amount of energy I have (and then crash nicely), but if I think of my friend two years younger who just last year ran her first triathlon (hi, Claire – I am so proud of you!), I can thoroughly depress myself in no time – to no point.
The attention’s like the snake oil salesman: they all start by empathizing with your symptoms – and then try to SELL you something. Otherwise, they have no empathy. There is all this big hoopla over Ampligen and fast FDA approval for its use for CFS – stuff’s expensive. Follow the money.
Otherwise, ignore disease, symptoms, and patient. No surveys, no samples, no attention. It gets a little frustrating.
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