I'd say where all da white women at, except -

Lupus is a disease that disproportionately affects minority women, especially black women. Doctors aren't sure why that it is, but lupus does, indeed, hits 2-3 times more minority women than white women. That's not an anecdotal statement, that's scientific fact.

But I've noticed something weird. The weird part comes from how many more white women I see in support groups as opposed to women of color, even though technically, there's fewer of us. Why is that? The one face-to-face support group I found was in a predominantly white area, but you'd think the racial breakdown of the disease would still lend itself to there being more POC in the room. Does it have something to do with socioeconomic factors? Is the idea of "support groups" more a white-people thing?

It seems really weird that something like that would break down over racial lines, but maybe it does? Am I just not noticing the number of minorities, since I am white myself, and am falling into some kind of visual bias?

Benicek, THANK YOU FOR THE PAID TIME! I really appreciate that! I've been wanting to go back and upload various pictures into my entries, as the Photobucket links are now all broken. I'll be able to do that now that my Scrapbook is able to hold more pictures. THANK YOU!!!

And Penlessej, that's fascinating about the BP levels. Now that you mention it, it makes total sense. The night that I was originally admitted and kicked this whole thing off, my blood pressure read 207/113. At the time, I had no idea what those numbers meant and even less understanding of why the nurses were so concerned. My nephrologist did say there is a strong connection between blood pressure and kidney functions but I hadn't quite realized it until you put it down like that. It amazes me just how interconnected the human body is. I always sort of saw my body as this thing that swung around with lots of independant parts working side-by-side. If one fails another would just work a little harder to take its place.

Turns out the body is less a system of ropes and pulleys and more a human sized game of Jenga.

And you're right about the survivability factor these days as opposed to the days of yore. In the end, I'd much rather choke down entire pharmacies and get hooked up to dialysis instead of just straight up dying. I often complain about the cure being worse than the disease, so it's good to be reminded of the fact that without these cures, the disease is death.

For a final bit of hilarity, I remember having a thought as I was leaving my disability hearing last week. Rachael (deadname David) who constantly touts herself as being "disabled", had complained about her own disability application being rejected. (After only one application, no attempt at appeals, and a disgustingly entitled belief that her "disability" should put her on the same fast-track as those with cancer. Hell, even my disability application wasn't put on the same level of cancer.)

But her disabling "depression", you see, is so disabling that she's not able to work and also not able to not spend 14 thousand dollars of rent money on anything but toys and also makes her unable to attend free treatment even when other people bust their balls trying to find it for her. (Yes, I'm still mad about that. I think I always will be.) From what I recall on her Twitter, there was a lot of wailing and teeth-gnashing and postings of "guess I'll just die?" memes.

Bitch, you don't know what it's like to actually be disabled enough to possibly die (oh, the rants I've been wanting to make on that one!!) But more than that, the thought I had while climbing into my car after the hearing that I had waited two years for, roughly 15 hospitalizations, and the doctors confirmation that I was looking at permanent dialysis was "Did you think it was as easy as saying "I can't work send me a check pls."

Yes. Yes, she did think it was that easy.

It's infuriating, but it's also high hilarious at the same time. And when it comes to dealing with disability, I'll take all the laughs I can get.

This entry was originally posted at https://quirkytizzy.dreamwidth.org/1119171.html
Lupus is more common among non-white women? Hm... Interesting fact.

Why they're less often in support groups, I could imagine the following reason: The one fact that you always encounter in this world if haven't been born to wealthy snobs - money.
People with low income go to doctors less often in general, if you don't have a general health insurance system in your country (and even those countries which officially have, still this is true too because they're also on a course of making people pay strongly for their health care treatments).
Then, people with lower income less often get diagnosed with a more severe disease because they're much less a source of income for doctors, medication producers and others for all who work in the health system itself - technically they would be, but that for they needed money to be this in the first place.
(At least that's my impression for the system here - if you're dependent on all payments a health insurance does for you anyway, decisions on approvements or not can take their sweet time in the bureaucracy apparatus, and so all institutions who can offer you treatment seem to be on the lower end of campaigning for you as a patient. They like to get rid of you as quick as they can because you just mean a penny in payment for their work - and this they even to fight over with the health insurance itself in order to get it approved. Much more comfortable this is if you've got a potential patient who has his own income and a different health insurance company. If this doesn't approve the treatment, the patient can pay it on his own at least...)
So, in the end, poorer people might potentially run around with something more severe diseasewise going on in their bodies, but because of the lack of proper health checks, compared to wealthier people, they're more likely to end up with only the troubles of the disease and receive no proper treatment. Which also might result in them dying earlier...
All this makes it that they won't seek help and advise from other people.

Another factor I'd consider to be in the game is that the general education of the doctors isn't that well, so they often don't recognize such more deeper-going diseases like Lupus.
Sometimes there are also some general cliches around about them, like "people in age X can't disease Y, they're much too young for that!".
I think I've seen that change with MS over a course of 10 years. 10 years ago, doctors would have been too dumb (and maybe too arrogant?) to diagnose someone with MS when he was only 18 because it wasn't the general span of age where they encountered this disease "usually" (according to the previous records).
These days - it seems like not that much a problem anymore. They seem to have found that much more people are affected by it beyond the beginning of their 30s.

Very, very strongly the lack of education seems to be when it comes down to #1 of the widespread diseases of these days, called "Cancer". People sometimes suffer from various symptoms and health problems, but cancer as the source of it the doctors just discover when it's almost or already too late...

At least, if you ask me, when I try to find the sand in the clockwork, I just go through all kinds of possibilities where it could be, and by doing this I receive different data and information, which, in the end, makes a certain vague or concrete picture, and by that I can tell then now where's the error in the system.
And just that's what I think doctors much too often don't do these days...
In more severe or complicated cases this should be what already gave you the indication for if there's something bigger going on.
But, if you don't make an effort to acquire that information, you'll end up much quicker underestimating something highly.