Discussion in 'Lifestyle Management' started by Tulip, Jun 19, 2011.
this seems to sum up alot of the reactions i get.
I agree that the nature of our Disease with the post-exertional "malaise" is inherently confusing, and that the general ignorance--people just don't know that this is serious and disabling--are definitely factoring in. The name again.
It's also a good point Alex made about the work ethic. Great (and moral) thing when healthy (as long as combined appropriately with compassion for the less fortunate), but makes it difficult when combined with current expection that disabled people are going to work (with accommodations), and then people don't understand which disabled people actually can't work. Which again, stems from ignorance, misinformation, and a cheezy (and misued) label--and lack of accepted biomarkers.
It's much easier (still difficult, but reasonably accurate) with, for instance, Lupus; you have some combination of specific labs and clinical signs and symptoms, and you get a diagnosis which allows you to study people who have clearly related disease pathology (in actually several sets, which can be studied individually, or compared with other inflammatory conditions depending on what aspect is being studied).
And you have a narrative of invisible disability which is believable (because of knowing there is a pathology, and because of knowing "Lupus can disable") to those with the capacity to understand--people are unable to genuinely understand chronic disease when they have never had any close contacts with one; this is not a lack of empathy and not a lack of trying, but just a lack of context with which to understand information. I have come to conclude that it's genuinely impossible for most.
Our disease should be similarly diagnosed--even if we don't have a single laboratory measure (analagous to antibodies to double-stranded DNA in Lupus) for the entire set of those with related neuro-immune conditions not otherwise diagnosable, we could still use a combination of labs, imagings, and clinical signs and symptoms... to get a pathologically similar disease group, or a set of disease groups with pathological similarity within the subgroups. There is no good reason on Earth why we should not do this right now (or why we shouldn't have already been doing so).
I was thinking of that, too, but in the book of Job, God chastises Job's "comforters" for that. You'd think that might have put that idea to rest. But as the Wiki article says "If the potential victim avoids the behaviors of the past victims then they themselves will remain safe and feel less vulnerable." Also, if you can make the victim in some way "other" --that is, different from yourself-- you can feel safe. Like in the early days of AIDS (and even to this day, to a certain extent).
But that doesn't explain some people's thoughtless remarks in response to grief. Maybe some of it is just cluelessness. I also think some people lack the type of imagination that allows them to put themselves in someone else's place, so if they haven't had a similar experience themselves, they can't conceive what it would be like. And maybe they're so oblivious they don't know they don't know.
Also, some people have a strong fix-it reaction to any problem. No matter what it is, no matter if it's unfix-able, they want to solve the problem. So sometimes they'll say something stupid like "You're young, you can have another baby." They don't understand that sometimes it's not a solution you need, it's just someone willing to listen (and hopefully, understand). When faced with someone with ME/CFS, these are the ones who always know someone who got well by xxxxx. Or who say "If you'd just get more exercise..." And they get irritated when you don't cooperate by getting well, or if you're reluctant to try their yak-dung cure, because you're thwarting their attempts to fix-it. So they surmise you just don't WANT to get well, or somehow construe it that it's your fault you're sick. I think I understand this kind of person, because I have these tendencies myself and have to curb them.
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