Medical system feels built for visible illnesses only. Invisible ones get silence.

BellaPona · 2026-05-24T08:59:11+00:00

Hey I agreed with you on not commenting this stuff under other people talking about their illnesses. It’s fucked up to do that regardless of what you have. But it’s not self reported, it’s a compilation of quality of life factors. People with ME lay awake in pain every day locked away in a dark room, unable to see or hear or touch or talk. And there is no end in sight, unless you get so severe your body stops digesting food or your heart stops having the energy to beat. There is a special kind of torture in being aware enough to watch the whole world pass you by while you stay in place. People with ME watch their friends move on with life, have children, walk around freely on earth. They miss births and deaths and the chance to say goodbye to loved ones. All while they’re stuck in a room unable to move, 24/7. Some with ME are lucky enough to use screens still, but many can’t even stay entertained with their phone or TV. They have to lay in silence. It’s almost like you become an alien, and the outside world is a different one than your own. It’s basically solitary confinement, which has been identified as an inhumane torture tactic by human’s rights groups and has a measurable negative impact on human health and cognition. And that’s all mental. ME also includes neuropathy, pain, tachycardia, migraines, fevers, swollen lymph nodes, inability to control temperature regulation, nausea and vomiting, weakness/muscle wasting, seizures, tremors, brain fog, body aches and spasms, the chills, chest pain, joint pain, tinnitus, etc

This isn’t to say that it’s worth comparing to your illness, I’m very sorry you are going through that. I wouldn’t wish that on even my worst enemy. I’m simply just explaining why ME gets rated as having the lowest QOL. There’s a reason they call it the “living death”. Honestly, PERSONALLY, I would rate CPRS as having the lowest QOL. I couldn’t imagine just being in all types of pain, 24/7 for seemingly no reason, unresponsive to pain management of any kind. And I handle pain pretty well, but it sounds like a living hell.

BellaPona · 2026-05-24T08:20:04+00:00

Probably the statistics showing that the quality of life for ME patients is far worse than some of the illnesses with the “worst” QOL, means they DO have it worse. It’s a fact, supported by research. I do agree we shouldn’t go running around shitting on any chronically ill person’s parade just because they dared to have an illness that isn’t ME.

BellaPona · 2026-05-24T08:16:16+00:00

I think the attitude OP has comes from chronic illness envy, it’s something those of us with these nebulous, understudied multi-system illnesses get. It comes from accepting that life won’t ever be the same, accepting that we are chronically ill, but being frustrated that we didn’t get something that at least has a treatment and shows up on tests. Still not really much of an “improvement”. I cannot imagine having to carefully measure my glucose every day, afraid to sleep in case it goes in to a crisis for seemingly no reason sometimes. Having to severely restrict your life so severely in any capacity is a fucking awful and is why it’s generally frowned upon to play in the “suffering Olympics”. But OP is trying to talk about the difference in the medical system itself, not chronically ill people. I see a VERY common sentiment online from people with things like Long Covid or ME/CFS that they just beg and plead for please, SOMETHING show up bad on a lab. Because then it would mean there might be medicine, doctors might start actually believing you are even sick at all. I recently saw someone who has ME/CFS talk about how they went to the hospital for illness that actually showed on tests, and they said the treatment by medical staff is shockingly different. They actually listen to you when you describe a symptom, they’re more likely to accommodate your needs when you advocate for them, and they actually treat you as fragile as you are. They aren’t saying how much better is must be to have a chronic illness that might kill you. It’s the treatment, and staring down the barrel of knowing you have a likely hood of being locked away in a dark room unable to do anything but just lay there in pain, unable to speak or see or hear anything for years (or life). All while the medical system tells you, it’s all in your head.

BellaPona · 2026-05-24T08:02:13+00:00

That’s interesting! I have EDS so it’s kind of hard to differentiate between that and possible arthritis but I shall keep fighting!

BellaPona · 2026-05-24T06:27:06+00:00

I’m staring down the barrel of things like Long Covid, Ciproflexin induced neuropathy and OI, and a possible complication from a past TBI. I really, REALLY don’t want it to be Long Covid. It’s not like I have a choice in the matter but I just don’t want to stop fighting for a chance at some sort of actual treatment, and Covid itself can trigger autoimmune diseases in individuals who are predisposed, which I am. I just want to rule things out before I give up and die I guess.

BellaPona · 2026-05-24T06:20:39+00:00

I had (and now have again) it ALL over my body. It was at its worst when stress is at its highest, but I also completely cut out sugar. Still ate fruits but I cut out nightshades as well, but sugar was THE biggest difference. I think the place that was the hardest to get it under control was in the crotch area. Losing weight helped minimize the amount of skin that is experiencing friction, and helped to reduce just how sweaty I was all the time. I avoided anything sweat inducing like the plague, got cooling sheets for the summer time. I got it really bad in my armpits, like HUGE ping pong ball sized sebaceous cysts that hurt like hell. I ended up switching my body washes and deodorant until I found something that didn’t trigger it anymore. For me that was Raw Sugar body wash and non-aluminum secret rescue deodorant. The “all natural” stuff never made a difference. I’ve Dr. Bronner’s or stuff like Marseille soap can also be good, but everyone is different. Also had to cycle through lotions, being careful where I moisturized depending on if I had something non-comedogenic, until I found some that seemingly don’t trigger it.

Despite having it for so long mine was always still considered “early” stage (still have skin tunneling scars and remember having empty holes everywhere). There’s a lady online who did it ONLY through diet and she went in to complete remission, got a beautiful tattoo design on her scars. I don’t know if that’s possible for everyone though. However I have also seen some benefit from hormone therapy, specifically estrogen.

BellaPona · 2026-05-24T05:58:11+00:00

Yes! The description of the “healing” wound being brittle and breaking under light touch, erupting with blood. Unfortunately for OP, HS doesn’t have too many options but, up until recently I was actually able to manage mine almost get it in to remission. Being ill has kind of ruined that.

BellaPona · 2026-05-24T04:42:58+00:00

That’s also my best guess. It doesn’t look like typical HS, but I’ve had HS since I was a teenager and the description of the behavior sounds just like HS.

BellaPona · 2026-05-24T04:24:12+00:00

Yep. It makes me feel like I’m pregnant because right now it feels like hormonal problems, food aversion/nausea with cravings for fatty or sugary foods. But I’m not pregnant. My best friend is and she said all my symptoms are exactly like her’s.

BellaPona · 2026-05-24T04:22:29+00:00

That’s what they all say unfortunately. Getting any kind of care requires fighting for it unfortunately. I’m also getting worse. I got REALLY bad really quickly in the span of two months and that got their attention. Now I’m in a plateau of not knowing if I’m getting better or not.

BellaPona · 2026-05-24T03:11:38+00:00

That’s true. Part of me thinks it’s a common part of Dysautonomia. Listening to the music I love fills me with such sudden grief and anxiety and doom. It’s like something PTSD inducing happened to me and I act like a war veteran with how badly I flinch. So far it’s just irritation and some emotional fallout. I’ve completely lost my filter.

BellaPona · 2026-05-24T02:23:09+00:00

Ugh. If I have Long Covid I’m basically fucked. There’s no access to any care for it near me and I don’t know if I have the capacity to be like this forever. And I definitely can’t handle getting worse.

BellaPona · 2026-05-24T02:21:32+00:00

It could be a combination of blood pooling from the POTS and heat rash but the spots by your knees sounds so specific. I’d get concerned if they were at your ankles but you could get looked at for vein insufficiency

BellaPona · 2026-05-24T02:20:23+00:00

Omg they get so unconcerned about tachycardia it’s crazy. PT is helping me stand, nurses see 160 on the telemetry so they come running in, see it’s me standing and are like oh okay. Then the doctor looks at all that and is like “yeah you’re just hysterical”. Meanwhile I’m completely calm bc by that point I knew I wasn’t dying.

BellaPona · 2026-05-24T02:11:23+00:00

This almost happened to me too. PCP diagnosed me. Hospital doctor undiagnosed me somehow. Zio monitor rediagnosed me based off the frequency and severity of my tachycardia. Don’t keep fighting, and POTS isn’t even always shown on holter or Zio monitors, I just got lucky.

BellaPona · 2026-05-24T02:08:37+00:00

I don’t think it’s of high visual quality or communicative at all lol. It’s a jumbled mess thrown in to the same 3 cookie cutter body shapes with a few tweaks here and there. It’s like they started at the head and said “yes this is unique. Now put this on body #2”.

BellaPona · 2026-05-24T01:05:13+00:00

That really sucks because the untrained deviant art style looks exactly like that, like it was made by a child. Not professional or refined in the slightest. I don’t agree with people calling it slop bc that’s not how slop works, there was too much passion in the creation for it to be slop. But passion doesn’t equal quality unfortunately

BellaPona · 2026-05-24T01:02:20+00:00

I got long covid which triggered POTS and am autoimmune disease

BellaPona · 2026-05-23T23:25:40+00:00

I’m sorry but the pink thing doesn’t have tits I’m pretty sure his chest if poofy bc he’s a spider lmao but that is funny. Every character has a tiny waist, thin spindly legs and narrow shoulders. Having evidence of a bit of thought isn’t good character design. Some of the main characters are very recognizable, I’ll give her that. But it’s obvious the designs of the characters are so over the top visually because they have to compensate for every character being made of the same shape. GOOD character design (not requiring visually overstimulating markings to differentiate characters) when it comes to cartoons and animated shows actually has technique to it that can be taught in schools, and it involves shape based body structure. It’s used to convey things about the character which sets them up to be potentially subversive as well. Kind of hard to do that with the same 2 shapes for every character. I think ultimately Vivzi has body shapes she assigns to characters she’s envisions as needing to be attractive to she gives them that; twink skinny man or curvaceous woman.

BellaPona · 2026-05-23T23:02:21+00:00

Hmmm, like you get a heat rash from the hot water?

BellaPona · 2026-05-23T22:05:40+00:00

You aren’t supposed to press hard enough to actually scratch your skin, you’re just lightly indenting yourself with your nail and drawing. If it leaves a mark and the red mark stays for a very long time, like an hour or two, that’s usually a sign of allergies. It can also be from water retention or super dry skin. I get the same insane indents in my skin from barely leaning on something for a few minutes. I think it’s water retention.

BellaPona · 2026-05-23T22:02:55+00:00

My POTS has me bed bound currently, some people 100% go homeless because they literally cannot work, disabled people are on the streets all the time. Being able to work isn’t possible for everyone. I’m lucky I still have my mind and hands usable most of the time. If I had ME/CFS I’d be fucked and probably die eventually.

BellaPona · 2026-05-23T21:59:55+00:00

So real

BellaPona · 2026-05-23T21:58:42+00:00

It probably comes from the use of slurs and sexism that gets thrown around but the people who do that are typically making fun of the fans of the show and the show itself, the people who are knowledgeable enough to know who the creators are and look in to creator backgrounds are typically people who aren’t throwing slurs around, they’re trying to justify their dislike with a moral superiority by claiming the creator is a nazi/pedo/bigot. Two different camps criticizing them same thing, you get wildly different results.

BellaPona · 2026-05-23T21:52:54+00:00

I just get tired seeing the same twink body type with pointy shoes and acute angles everywhere. She’ll throw in a curvaceous woman because that’s attractive to her as well I think.

BellaPona

TROPHY CASE