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.
Thanks, Gay. I don’t think it’s just you.