This seems like something everyone should know if they’re in the sciences and/or interested in reading scientific papers.
Also, Sci-Hub is totally not a thing that doesn’t allow you to access papers, so don’t even think of trying it. This isn’t the link, so don’t bookmark it: https://sci-hub.tw/
They may also present less passively and will instead: *fly off into angry rages when something mildly irritating happens *refuse to self care and instead force themselves to do everything without complaint *constantly expect others to treat them the same shitty way and cut peole out before it can happen
A specialist recently told me that what your label is (meaning your diagnosis) doesn’t matter because no matter what you’re diagnosed with the symptoms and getting treatment/management for said symptoms is what they focus on and what you should be focused on and your diagnosis changing won’t change that.
Honestly though? I disagree diagnosis’s and “labels” are important to the patients even if they aren’t to the professionals. Maybe in the medical community they care more about your symptoms than what your diagnosis is (although I can confirm that this 100% isn’t always the case, especially when you’re undiagnosed) but in the real world it matters.
It matters if you need to access certain treatments that require a formal diagnosis.
it matters if you’re at risk of developing certain secondary conditions, complications or injuries
It matters when you’re trying to get future medical help or another diagnosis.
It matters if you need help or support at work, school or college.
It matters if you need to apply for disability benefits, a disabled badge or home adaptions.
It matters for your mental health. when you’re worrying about what your symptoms might be caused by.
It matters (unfortunately) when other people ask why you haven’t been able to do x and y for so long and you don’t have a “real” answer so people think you’re exaggerating or faking because if there was something *really* wrong they’d be diagnosed with something right?!
Not only is it important for the above reasons (even though being diagnosed doesn’t always help with the things above) but my illnesses are part of my identity, part of who I am and being able to label myself as a disabled person with hEDS, fibromyalgia etc. Is empowering and gives me a sense of pride and self acceptance. Those labels come with a whole community which have given me a sense of belonging. Being able to talk to others who know what I am going through makes a huge difference and helps me to feel less isolated and alone. Finding people going through the same thing quite literally saved my life.
When it comes to identity, I feel the same way about my sexuality. Being bisexual is part of who I am and having that label, being part of a community has made a huge difference to how I feel about myself and helped me to get over my internalised biphobia. My sexuality is part of my identity. My disabilities are also part of my identity. The only difference is that people are usually encouraged (and occasionally even pressured) to label their sexuality but when it comes to disability and illness people, especially medical professionals don’t want you to label yourself.
Maybe we need to look at why and stop seeing illness as something bad and negative that we need to hide from the world and start seeing it as a part of who some people are and something they identify with.
Not to mention there are some things that go along with certain conditions that would be super helpful to know on advance – like how EDSers often process anesthesia differently?
You know what doesn’t sound fun? Randomly waking up in the middle of surgery.
Also, how certain symptoms are treated can vary GREATLY depending on the cause.
Like, Pepto and Tums aren’t going to cut it if your nausea is from Gastroparesis.
Any doctor who says labels don’t matter, I will personally diagnose them with a case of These Fists.
EDSers process anaesthesia differently?! Is that considered to be an official symptom of eds?
I’m only asking because I’ve always had problems with local anaesthetic not working fully or taking ages to work. Also I usually need a lot of extra for it to work at all. My mum who also has hypermobility type eds has the same problem. (I’ve Never had general anaesthetic so I’m not sure if it affects that too but I’d be terrified if I needed surgery.)
Local anesthetics have never worked right for me, and I was also very interested to find out that it’s a common EDS/HMS thing. Was going to add a couple of links, but searching on “EDS local anesthetic” turns up a lot.
I was glad just to find out that, no, I haven’t just been imagining that, and it really is way more effective for most people. Getting the relevant people to listen has been more of a problem. The last time it came up with trying to convince the NHS to cover some serious dental work under sedation (successfully!), I took some printouts along.
Just in case it might help on shorter notice, I also got this Local Anaesthetic in EDS keyring Card. That hasn’t come up so far, but with any luck having something to show them might help the issue get taken more seriously. Something to maybe consider for anyone who might need a little backup.
From what I understand, general anesthesia thankfully isn’t usually the same kind of problem with EDS/HMS. I’ve personally never had trouble with it working properly, and haven’t seen people reporting it.
(Though I do have apparently unconnected problems with getting extremely sick for a couple of days afterward–with very high fever, vomiting, and delirium so that they’ve been afraid it was infection. The last time I had surgery, I told the anesthesiologist about it in advance, and changing the blend of drugs did stop that from happening again. For anyone who might have run into similar issues. I don’t think they ever told me the details, and it’s been a long time, but that is apparently a known thing.)
Boozhoo (hello), my name is Ken, I am a disabled Ojibwe artist from northern Wisconsin. I am writing this post because I am having a hard time making ends meet and any donations I could possibly receive at this time would be greatly appreciated. Recent events have left my bank account depleted and my cupboards bare, I have some food but it will not last and I still do not know how I will cover all the utility bills.
I do have PayPal, that is really the best way to donate at this time, the email I use for that is: baapimakwa@gmail.com, or you can click here.
July update: still $120 short on the utilities and now our only vehicle has broken down, going to need to find alternate travel for shopping and doctor visits.
You can get a lot of disturbing information about someone’s values…
When they start from the assumption that there’s just too many of a certain kind of people, and then go from there.
Like I just read a post that touched on the idea of aging baby boomers as a burden on younger generations. Which already says a about unspoken bigotry against old and disabled people: Setting taking care of someone as a burden shows a lot about both values and understanding of how things do work versus how they ought to. But then…
It veered into a discussion off the problem being the parents of boomers fucking too much and producing all these babies. The idea being, there’s just too many of them. I am not trying to put on the spot who said that nor did I even check who said it, I don’t know that they personally wager thinking these things but many people who say them are, is common to think this way, I’m not exempting myself, I’m not calling anyone out, I’m just discussing the ideas, so please nobody take this as an invitation to attack anyone. We all hold ugly ideas we’ve never looked at. I’m looking at them. If you think you’re above this, look harder at yourself.
(Also full disclosure: I’m late gen x, one parent earliest possible boomer, one parent silent generation. More disclosure: I’m massively unimpressed by most things I hear about generations and what they mean.)
So as soon as you’ve decided there’s just too damn many old people, poor people, people from the “wrong” countries, disabled people, brown people, any kind of people… You’ve just told the world you on some level don’t value that kind of people. I have never seen a discussion that starts from that idea end anywhere good. There’s something wrong, terribly wrong, with the assumptions you’re starting with.
This is different from the occasional discussion of numbers that is necessary. I’m originally from California (Okie descent) and there’s more human beings in California than the amount of water in California can support. But even discussing that, you have to be extremely careful not to slide into assumptions about which Californians matter.
But discussions of “overpopulation” in more general terms almost always mean there’s too many brown and/or poor and/or “third world” people, not actually something more generic like it sounds. They hide the same ugliness as the hordes of aging boomers idea.
A completely different take on the number of boomers:
Many disability rights activists have been hoping that as boomers age and more become disabled, this will lead to more support for disability rights causes. Among others, it could lead to some stage of dismantling the stranglehold nursing homes and other deadly and soul-destroying institutions have over the way assistance id’s provided to disabled and elderly people. Whether this happens is still up in the air but it’s a notably more positive take on the idea of “hordes of aging boomers”. And one that, like most disability rights ideas, most people have neither heard of noir considered. Since most boomers as burdens ideas come from the same ugly place nursing homes come from.
The supposed different “generations” i.e. millennials/Gen X/boomers etc is just liberalism’s attempt to replace class analysis by framing the different generations as coherent classes with different interests. It conveniently fails to mention that there are working class & ruling class people in all generations.
By making all ppl of a certain age responsible for inflation & higher cost of living or w/e, the responsibility of the ruling class is obscured, to the detriment of the working class & to the benefit of the ruling class.
Most of the boomers I know are mushy liberal ex hippies at the very least.
The whole idea that “the boomers did it” without specifying which ones has always made me ?????
Also like… specifically on the issue of “taking care of this silver morass of cranky old farts is hard when our economy sucks” at least
Part of the problem is their parents gleefully fucking like bunnies after a war
That’s what “baby boom” means??
Millenials are technically the second lesser baby boom I think too? Like when I was in school my grade was actually the largest since the boomer generation. HALF of my town’s elementry schools are closed now because they didn’t need like 5 of them after we graduated.
Maybe that is why the boomers are blamed specifically. My age group would mostly have boomers as parents (there are so many of us because there were so many of them) so they are technically at fault for having us lmao.
Also there’s a lot of bigotry against old & disabled people hidden in that idea of boomers as burdens. (FWIW I’m late gen x, brothers also gen x (we straddle entire generation pretty much), mother earliest boomer, father silent generation. Not impressed with most ideas about generations.)
Urocyon's Jaunts 2.0 
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