Wednesday, November 19, 2008
Timely reminder
And I've just found this article. While I do raise my eyebrow at the idea of "beating" CFS (for most it's an illness we manage for the remainder of our lives, even if we manage to come through particularly bad patches), it's great to see someone with a profile like Layne Beachley talking about their experiences of Chronic Fatigue Syndrome. For even more perspective, read some of the comments of others below her article. You'll see there are some people who feel they are 'cured', many more who know they aren't, along with a breadth of other experiences. I think the most important thing to take from it are that no two experiences are the same, and for every 'solution' that works for one person, there are two more it didn't work for. It's a really, really tough illness to treat, let alone discuss (even amoung people who suffer from it). I do believe that the important part is that we stop pushing it under the carpet and keep discussing. The stigma is often the most debilitating aspect... or is that just me?
Subscribe to:
Post Comments (Atom)
2 comments:
I am led by my personal experiences to not share your optimism. For me, articles that trumpet things like "Diet and an attitude change cured my CFS!" are not just unhelpful, but can be positively harmful.
There is nothing in the article that adds new information to people with no CFS experience or knowledge, nothing that attempts to break down existing stigma, and plenty to reinforce trivialising and PWD-blaming attitudes. There is nothing about the difference between CFS/ME and "chronic fatigue", or burnout, or other mimic conditions. There is no realistic attempt at myth-busting, only a grudging "Oh, it's a 'real' disease now" - followed by the idea that an "attitude change" can fix it. If an attitude change can fix it? That means that the cause is an "attitude problem". Ugh. No thanks.
The worst CFS-related experiences I've had with people in my life is with people who "know" that diet, exercise, positive thinking, antidepressants, vitamins, herbs, energy medicine, or whatever else "cures" CFS - because they read it in the paper, or know a guy who knows a guy, or whatever. I've gained support from those who have been through it, or from those who know nothing. But people who have a tiny bit of misinformation or have read a few half-truths? They've been by far the worst.
I do understand where you're coming from, and some days I certainly feel the same way. For me, though, any time someone comes out to discuss their experience with CFS it is another story that my Mum or my partner can add to their bank of stories that helps them understand (or is a gentle reminder that) this is a long running battle for me. I may not always be like this. I might be like this forever, but it doesn't mean I'm worthless. I'm still a person in here.
I've gone through lots of stages and relationships towards my illness. At the moment I'm a little more mellow. I just want people to know that CFS is real, it's different for everybody and it's not something to be ashamed of. That's been a challenge for me to accept even for myself thus far.
Post a Comment