It seems when an illness is neglected/poorly understood by medicine, people feel license to treat their experience as True. Contrast this with “serious” diseases where people are aware there’s a range of severity—reinforced through knowledge of its worst manifestation—and so feel rightfully cautious about generalizing.
Something similar happens in the CFS subreddit with its generally less-informed user base and it makes me feel like I don’t belong there.
I was often struck by the list of things that many (not all) attributed to their survival/recovery including their own strength of character, supplements of choice, lifestyle changes of choice, alternative medicine of choice. Very little mention of the ££££££ in research, surgeons, specialist nurses etc.
Not only did they dictate what each other should be doing they extrapolated that to everyone else.... "Well, it cured me of cancer so, you know, if it cures cancer it is bound to be good for...."
Very alienating for those whose treatment isn't going well or those with conditions that haven't benefited from vast, well spent research funds.
Yes, and that’s why I really appreciate this forum. I think there’s something special here that I haven’t found on any other forum or on facebook (if there’s something similar on fb let me know..).
These things - what recovery means, what control groups are and why they’re so important, blinding & double blinding, and when experiences are subjective - what that means. Not that people are making things up, but it’s not as simple as - “they’ve recovered. that is the “right thing” to do. I didn’t do it. Now I have to try it...even though I’ve tried it I’m still ill and it’s my fault.” Or - “someone’s telling me to do this. I should do this”.
These things are talked about in a very careful way, and it’s helped put things into perspective for me as well over the last year. Also the very rigorous and careful discussion on pacing, what it means, deconditioning and the fact it can occur but also why it’s a product of the illness & it’s not my fault. I’ve learned so much. When I first became ill I wasn’t that involved in the ME community, I found it too overwhelming. Then when I had my first relapse, I wrote a few blog posts then took a step back again as I found it
so hard that everyone had a different story & a different thing that helped them. And then I would hear of a different thing that made people worse. And then despite the thing that helped them, they sometimes said they got worse afterwards too anyway!
And for each, there would always be a few others that got better from that particular thing too. And things are just reported just as they are, which is probably understandable. With none of the caveats or reasoned or careful way of talking about it that is here, which helps me understand it more. I researched things like crazy, tried so many things, that took a lot of my energy.
I got contacted by someone who had read my blog, telling me they massaged a spot on their head and had a full recovery and that’s all I needed to do (!). I found it really hard to understand.. how could an illness be like this? But I understand it now, more... for a condition that doesn’t have treatment and has so little research, compared to other illnesses, it makes sense...also for a condition that genuinely does seem to wax and wane, often for no reason at all (and it seems to have happened to me), and we don’t even know what if any subgroups there are for ME.
But then now I’m slowly trying to get back into the ME community.. I’m still only half there as I find it overwhelming & I need time out often. But this forum helps me so much & I’m able to evaluate things in a different way now. And sometimes when I don’t and I feel confused..and when I start comparing myself to others.. I just come back here & feel better again.
(And I think I can honestly say if I hadn’t been reading this forum over the past year, especially since the focus and posting about very specific treatment/surgeries since last year, I would have been in a pit of fear and despair and confusion. I don’t think there’s anywhere else that is evaluating things the way this forum does. My science-y, maths-y mind is happy. I am grateful).
