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"I couldn't get out of bed for eight months - now I'm a burlesque stripper"

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I've had severe ME, so I decided I'd better double up and go with the feathers and the armor

norse_goddess_freya_by_dakotassong-d3husi9.jpg


The flying horse thing seemed like overkill, though.

....what... what IS it?

What does it want?
 

Calathea

Senior Member
Messages
1,261
The nearest I get to burlesque is doing the odd sexy wiggle while taking my clothes off before bed. The challenge is not to trip over while removing my trousers, of course.

I kind of hope someone has done the feather boa with wheelchair look at Pride. I've gone with a rainbow scarf, halfway there perhaps.

After some thought, I believe my superhero this-cured-me-from-ME is Ivanova. Because she is a goddess. I present proof.

Joking apart, this woman was obviously completely stitched up by the press, we have no idea what is actually going on in her life, and it is not remotely appropriate to start blaming her for this. The press are the ones doing the damage. Maybe she has mild to moderate ME, found that taking up her old hobby was manageable with her energy limits and really cheered her up, and wanted to do something to reduce the stigma of burlesque. I'm pretty sure that if I tried to talk to a journalist about how I've discovered quilting since I became ill, and have found it very therapeutic when I've been well enough to do it, they could present the story in a similar way, even though I'm still severely affected and have been known to have huge crashes from getting a bit too frisky in my attempts to do some cross stitch. Their disrespect for her physical and mental health was revolting, and we should not be mocking her.

I'm particularly unsurprised because I've been saying for years that sex workers (sex work covers a wide variety of jobs, including stripping) and people with disabilities are both highly stigmatised in ways that play out surprisingly similarly. I wrote about it here, and feedback from the sex worker community was great. I doubt it's a coincidence that the two were attacked together here, in a way that encourages even other disabled folk to mock and scorn the woman in question. For instance, it's common to make suspicious remarks about the mental health of both sex workers and folks with ME. Don't fall for that, don't let them set us up against one another, and stop having a go at this woman. She does not exist as the butt of a joke.

(Superheroes, on the other hand, go for it.)

I thought stress was a common ME trigger, generally when combined with a physical trigger? I got ME following burn-out and flu, for instance, which is pretty standard, and I'd been under high levels of stress for years which probably contributed as well. Stress has various bad effects on your body which make you more susceptible to physical illness.

I'd also suggest remembering that this is a large forum, sex work is pretty common, and there will be former or current sex workers on this forum. A friend of mine with a connective tissue disorder, not quite sure of her level of disability but it's moderate at the minimum, does cam girl work. It's something you can do at home in your bedroom, it's not too physically exhausting, although she does pretty long shifts of it sometimes. If you're thinking of sex workers as "them" rather then "us", stop it.
 

Calathea

Senior Member
Messages
1,261
Awesome article! (Maybe that's what the dancer with ME was going for?) It's great to see something discussed that way, positive and full of nuance, and aware of the stigma against disabled people being sexy rather thna furthering it to point and laugh.

Did anyone else look at the first photo and think connective tissue disorder? It's odd, it takes so many years to get a diagnosis, yet from another viewpoint it's really obvious. Admittedly the context was a huge clue. It's common for dancers to be hypermobile to some extent, but if you combine hypermobility (doing the splits) with wheelchair use, that tends to mean a connective tissue disorder such as EDS. Speaking of wheelchairs, hers is gorgeous!
 

Undisclosed

Senior Member
Messages
10,157
Awesome article! (Maybe that's what the dancer with ME was going for?) It's great to see something discussed that way, positive and full of nuance, and aware of the stigma against disabled people being sexy rather thna furthering it to point and laugh.

Did anyone else look at the first photo and think connective tissue disorder? It's odd, it takes so many years to get a diagnosis, yet from another viewpoint it's really obvious. Admittedly the context was a huge clue. It's common for dancers to be hypermobile to some extent, but if you combine hypermobility (doing the splits) with wheelchair use, that tends to mean a connective tissue disorder such as EDS. Speaking of wheelchairs, hers is gorgeous!

Actually when I was reading this lovely stripper-cure article, I actually thought EDS from her pictures and from the description of her symptoms. But then again, I doubt people with EDS get any great relief from their disorder simply by jumping out of a wheelchair and dancing around either. Even if she was suffering from some kind of clinical depression, the burlesque recovery method is quite insulting. When you frame the main way of recovering from any illness using stripping, CBT, standing on a piece of paper yelling 'STOP' blah, blah, blah, you are insulting and demeaning people who have the illness under discussion. It's a shameful way that certain rags in the UK twist stories and facts about ill people just to make money.
 

Calathea

Senior Member
Messages
1,261
Exercise can help with pain for some people, endorphin production and so forth, so that might be a part of it. For folks who have something vaguely similar to ME (there is plenty of overlap with connective tissue disorders, and I seem to recall quite a high comorbidity rate), who don't have the all-important post exertional malaise, it may help. It's why it's important to differentiate fibromyalgia from ME, because fibromites quite often report that exercise helps the pain, and are more likely to be able to tolerate it than folks who have ME. (It's so much fun when you have both.) Of course, that's usually not workable for folks with ME, because if we have the energy to do some exercise and not get a flare, we usually have a long list of other things we want to do, like washing, cooking, socialising, or finally doing some housework. Even so, when I was well enough to go for gentle walks regularly, I noticed that they helped my pain during the walk and for a while afterwards. I try to keep up with very gentle stretches, not at a level which increases heart rate or anything, as that helps noticeably with some of my muscular pain. But that's purely something that some people may choose to do if and only if they are physically up to it, and most of the time it's not an option when you have ME. Judging whether an activity is manageable or whether it will cause a crash is a very hard thing, even for those of us who have been ill for a long time. It definitely is not something that should be seen as leading to a cure or forced upon people with ME. It's not really even worth recommending to people with ME, because it's so rare for people with ME to be able to exercise safely, and the ones who can are quite capable of figuring out good forms of exercise on their own.

Research fairly consistently finds that exercise can be useful in depression, but again, it's not just something you can wave around as "aha, we've cured depression," because it's not that simple. Especially since the nature of the illness interferes with being able to exercise in the first place. Last I checked, some of the effect was thought to be from the serotonin-boosting effects of being outdoors in sunlight. A friend of mine with depression now has a dog, and finds that going out with the dog for walks is a good thing for him. He still has depression, of course! These things tend to be a management tool at best, one of several, not a cure.

And yes, the media can go and take a flying jump.
 

mango

Senior Member
Messages
905
Okay, okay. I'll admit it.

latest


I cured my ME by becoming a Slayer.

?! uh, oh... ehhh... nice and easy, now... put that stake down, and stay still... don't move. i'll... i'll just... back out of here, slowly... quietly...

Vampire.jpg


(i really didn't imagine getting myself cured from ME would put me at a greater risk of being killed by a fellow sufferer! just a gentle bite, it seemed innocent enough, at the time...)
 

Violeta

Senior Member
Messages
3,006
?! uh, oh... ehhh... nice and easy, now... put that stake down, and stay still... don't move. i'll... i'll just... back out of here, slowly... quietly...

Vampire.jpg


(i really didn't imagine getting myself cured from ME would put me at a greater risk of being killed by a fellow sufferer! just a gentle bite, it seemed innocent enough, at the time...)

It was helpful for your hemachromatosis, but not so helpful for your overall condition.