Tomorrow is the meeting of the local EDS Society support group. I’m not sure if I’m going yet, but I might be. A combination of being too scared to meet people, kind of knackered and set in my ways, unsure what good it will do, if any, and annoyance with the parent charity (Which, yes, I am still a member of, but probably won’t be renewing).
I suppose the final point is easily dismissed – there’s a big difference between the people who write wooh and push it on the desperate, and the generally helpful people at support group meetings.
My “support group” so to speak is online, usually. I’ve started adding the blogs of other zebras to the “Zebras you may Enjoy” page, and eventually I’ll just add the blogs of random friends who you’ll find interesting too.
Any zebras following me, by the way, feel free to add yourself in the comments (Though I’ve probably added more than half of you already). What I really want is a webring, but that might be a bit too 1998.
A Very Bitey Zebra 
I’ve always called self-deluding clap-trap ‘woo’ but I think we are talking about the same nonsense!
That’s the stuff!
Woo vultures piss me off mightily.
I fart in their general direction. Their mother was a walrus and tgeir father smelt of elderberries.
My hate of woovultures is intense and complete. On the other hand, I’m curious and lonely and maybe meeting other zebras won’t be as terrifying as meeting healthy people who will immediately get the sad eyes when they see me in pain and start treating me like an injured puppy.
*Worries she has been treating Perspicacity as an injured puppy*
I guess every support group is different, but the feedback from the Bipolar UK groups is uniformly positive. I don’t really need or feel able to attend a real-life group, but I guess you have nothing to lose. If it’s a hateful experience, you just never go back!
“Woo-vultures” is an excellent term. The ME community abounds with them. (I do a lot of work for ME charities). It makes me very very angry.
Don’t worry, you don’t – There’s just a certain kind of person who, the second they find out that there’s anything wrong with me, immediately starts talking in a slowed-down, high-pitched babyvoice, trying to touch me, answering questions for me and (if orientationally appropriate) trying to get into my pants. It’s weird.
I think the “nothing to lose” angle is the one I’m going for – I’ve met a couple of the people there before (at a previous group) and there should be at least a dozen this time, so if I don’t feel up to sharing I can just sit in a corner eating gingerbread and generally not interacting – One good thing about EDS people is that they tend to just accept “Too tired, need to ZZZZZzzzzzzfffffrrrnnnnnhhhzzzz…” as an answer.
And your work with the ME charities is a cricket-bat in the face to the vultures 😀 keep it up! We need more evidence-appreciating minds in the patient communities to steer the charities in the right directions. And to just exist and be visible role-models to each other. You’re a brave one, and it’s good work you do.
Hee hee. You did make me laugh. I like to aspire to some kind of dignity at 53, so try not to attempt to get into anyone’s pants, no matter how much I pity their plight!!!! I suspect that you are quite a lot younger than me?
You’re right about the ‘brave’ bit. My commitment to an evidence based approach is not always popular. Luckily I am eye to eye with the medical advisers for both the charities I work for, so there’s no conflict with them, just some patients! Some people are so desperate for a cure, that they turn to woo as a last resort. And end up being ripped off of course by unscrupulous practitioners. Makes me so angry.
Hope today goes well for you. Cathy