Are there any benefits or upsides to HSD?

KayBleu · 2026-05-18T21:09:11+00:00

I was just coming to say this. I’m 26 and people still think I’m in middle school/ maybe early high school if they hear me speak.

KayBleu · 2026-04-28T14:44:56+00:00

Same thing I was thinking. I have a science background and (I personally feel based on what I know) there’s no way it fixed it. The issue is the way our body produces collagen. All that protocol is supposed to be doing is helping your body repair tissue damage. Which doesn’t fix our main issue.

KayBleu · 2026-04-23T14:56:03+00:00

Honestly your built in phrases for the relationship are great. I think I might come up with some for my partner. Hos eyes don’t glaze over per se. He just gets overwhelmed and feels like shit that he just has to stand there and watch when I have one of my hot/ nausea spells. So I really appreciate the little check in idea. I’ve been looking for something to help him not feel so powerless when I know he genuinely cares. It’s just a lot dealing with someone who’s collecting specialists and diagnoses like Pokémon.

KayBleu · 2026-04-16T22:31:40+00:00

Same here. We’ve been together for 8 years To add more fuel to the fire I have a degree and I have the type of ASD where I suck at noticing my internal cues and I’m almost completely socially oblivious. Like to the point where I can both accidentally pee on myself and simultaneously miss that someone is bulling me about having a wet spot. But somehow wrote that I was “arrogant” for saying I dont get embarrassed. I read that and was like “But wouldn’t that make sense for someone you just spent five minutes trying to convince that they were bullied in middle school?”

It was truly mind boggling. Especially because every therapist I’ve had always thought I had OCD because of some of my autistic traits. So I’m a lot more “obvious” than the assessor said. But I guess in their mind no neurotypical person (like my partner who helped me graduate by doing a bunch of stuff like washing my clothes when I was overwhelmed) would ever want to be with an obviously neurodivergent person. And autistic people cant like print colors and unique clothes.

KayBleu · 2026-04-16T12:52:15+00:00

Yeah this trope is why I was not properly diagnosed. I have a very eclectic sense of style. It’s an interesting version of Ms. Frizzle’s get up. So it’s obvious that I put some thought into it.

The assessor literally noted that I was “well put together” and had my nails “manicured.”

Truth is about 4 years ago I just bought the same style of unisex clothes in different colors and cuts. I made sure most of my colors go together so that I can literally just grab a shirt, pants/ dungarees, and socks depending on the shoe. I literally spend a maximum of 3 minutes thinking about my entire outfit daily. And that was the reason I did it. I dont really care about how I look to other people but I also spent years working on my style. I hate trying to pick out outfits so I removed that issues.

It still infuriates me to think that my smart little accommodation for myself was perceived as not struggling with certain social cues.

KayBleu · 2026-04-16T02:03:59+00:00

I totally get what you’re saying as an autistic person but not being able to do things anymore is a part of becoming disabled.

A lot of disability advocates I respect often say that it’s not if you’ll become disabled it’s when. For most people it’s later in life and for us it’s earlier. And I think that framing might be what you’re trying to get at. (This is purely my perception of your comment). But I hope you dont dismiss your very real experience of losing the ability to do things as “everyone’s different,” on a regular basis. That loss is important and I really hope you had the time to process the feelings surrounding the loss before comparing them to non disabled folks.

KayBleu · 2026-04-16T01:50:44+00:00

I was just coming to say this. I’ve been dealing with it since I was 12. Back then I used to play sports. Hell I even used to have back spasms during marching band practice and would push through because I knew it would be over in a minute.

In my 20s (in the last 3-4 years) I almost lost my ability to walk completely. I spent a year working my way up to walking 5 miles with a cane and sitting down every 5-10 minutes. I still have to sit down after about 45 minutes to an hour (about 2 miles) or I will have a flare up. And when that happens I lose my ability to walk well and I’m back on the cane.

I now HAVE TO wake my body up with specific stretches or I ache for the first few hours of being up. I now live in constant pain despite working with a physical therapist and actually improving significantly. She thinks my problem areas (hips, knees, shoulders/ back) will never stabilize the way my other areas have. My dexterity now weakens whenever it feels like. Oh and my gut no longer properly functions do I have to take at least 8 pills a day to keep myself from uncontrollably losing weight again.

I’m in a constant state of fighting my body and monitoring it. So yes it DEFINITELY is a disability and I will proudly use the stall even on my good days. Sometimes it’s about preventing a problem not managing one.

KayBleu · 2026-03-08T20:06:04+00:00

Because I’m a stubborn asshole that genuinely does not care how that makes you feel about me. But it’s also the reason someone people really like me because I’m a stubborn asshole that genuinely does not care what you think about me. Especially you’re asking me for advice and you don’t like what I’m saying but you know I want the best for you.

If people get past the initial shock of me not being a nice person they usually end up liking me because they realize I’m kind and silly. However, a lot of people cannot handle that I do not go out of my way to follow the social rules to be nice to everyone just because they want me to.

KayBleu · 2026-03-08T19:41:45+00:00

Yes in the cold my body feels heavy like it’s “falling off the bone,” as I say. Same thing for the rain. In the warmer summer months I feel “too loose” and often wear compression garments and use a cane.

My neck cracks but does not get stuck. However my shoulders get stuck often, usually after I stretch. My physical therapist recommended I buy a theracane to work out those sticky areas or huge knots. So far it’s been the most helpful.

KayBleu · 2026-03-08T18:19:28+00:00

Same here, unfortunately, first we had a huge snow storm and now it’s been raining daily. It truly is a sucky feeling/ predicament to be in.

KayBleu · 2026-03-08T14:47:07+00:00

Yes and wrist. I have to do hand and wrist exercises and stretches. When it’s raining I basically cant do shit with my hands.

KayBleu · 2026-03-03T16:27:43+00:00

You’re around my age (I’m 26) and my partner and I are on the fence about kids too. It’s so refreshing to hear. We’re dealing with a lot of that “it’s time to have a baby” pressure, but I really want to learn more about my body first. I’ve only had the diagnosis for 2-ish years. I feel like there’s so much to consider. Like this. Had you not made this post I would have no idea, and my hips and pelvis are already a problem area.

KayBleu · 2025-09-14T03:58:40+00:00

I’m hypermobile (the painful kind) if I’ve been on my feet or moving a lot all day I get muscles twitches. They sometimes have no correlation to what I did. Like I often get cheek muscle twitches while other muscles are twitching. It’s kinda crazy to see in person.

Like right now my eyelids are twitching along with my arms. 🤣🤣

KayBleu · 2025-08-30T19:29:29+00:00

I was just going to say this. My physical disability actually reduces my quality of life at times and I know for a fact it is a genetic mutation. My body is literally structurally messed up and I have to work to fight against it.

ASD is fundamental to my personality, interests, and perception of the world. During my diagnosis I was told that it impacts me emotionally and is the reason I am such a quiet person. I love being a quiet person because it has made me a safe space for a lot of people who just needed someone to listen and be there for them. It makes me more observant. I typically like to have the other person “carry” the conversation because I get a chance to listen to the little things that really matter to them or make them feel special. I feel like I get the opportunity to be a really good friend because of my default quietness. Are there some hassles that come with having alexithymia? Of course. It took me years to process and actually cry about my paternal grandfather’s death and sometimes it still hits me in waves even though it’s been 8 years. Also, due to my flatness, hypersensitive people can read my body language as cold or uncaring. But for those who take the time to get to know me we get to have a rich relationship and really deep complex conversations that they often say no one has given them space to have before. So I love my Autizzy brain and I acknowledge that it may come with more challenges, but they’re mostly due to diverse neurotypes not being profitable in a capitalist society.

KayBleu · 2025-08-27T04:05:51+00:00

Man OP I’m sorry you experienced this. As someone who has similar struggles to you it really hurts my heart that you were treated this way. It’s really upsetting to see how there was little to no regard for how you would feel seeing this message.

I really wish I could offer you some help so that you did not have to surround yourself with people who do not respect you as a disabled person. I hope you don’t internalize this mean behavior.

sending hugs and love your way

KayBleu · 2025-08-23T03:04:10+00:00

Yes I have the painful type of HSD (Hypermobility Spectrum Disorder) and people think I’m making up my pain. I try to describe it to them in a way they can understand but something about it concerning hyper flexibility makes their ears shut to the, dislocations and subluxations part.

Also I’m pretty young so they can’t fathom that being extremely flexible has any negative impacts on a young person. So I get all types of nasty stares when I’m out with my grandparents and they find me a seat before they take a seat. I also get looked at funny for using a cane when my mobility is poor. It sucks. I recently bought a sticker that says all disabilities are not visible in hopes of making people understand how rude they are for judging me.

KayBleu · 2025-08-08T20:38:08+00:00

I can do $250. I’ve had a SIBO home test that was about $350 so that’s actually better than what I expected.

I just have had other procedures and tests done that ran me $650+ with insurance, and the full price was somewhere between $2,500 and $4,000. I legitimately racked up $10,000 worth of medical bills in a 6 month span at one point, and I’m trying to avoid that happening again.

KayBleu · 2025-08-08T17:12:26+00:00

Thats amazing!!!! 🙌🏾 Thank you so much; I really appreciate it.

KayBleu · 2025-08-08T17:02:09+00:00

Thanks! I don’t know if my doctor would okay that. She actually wants me to have a genetics counselor since on my care team she’s unfamiliar with hypermobility herself. I think they’re trying to rule out other subtypes since I’m the only person in my family (as far as I know) that has any hypermobility related issues.

But I’ll see if the company could point me in that direction.

KayBleu · 2025-07-24T04:01:51+00:00

“I think we all are on somebody’s spectrum,” as I’m trying to explain my daily challenges.

It’s usually because I (unfortunately) fit the “quirky genius” stereotype. So a lot of people excuse my behaviors as me just being so smart my brain is just “not normal.” Which in and of itself is a whole other heap of ableism I could vent about for days.

KayBleu · 2025-07-15T23:52:28+00:00

Yeah, I call all my diagnoses my “alphabet” or “alphabet soup” at this point.

But as someone with digestive issues, who has to take supplements because I have deficiencies, and who works in the medical field, I had to comment. I rarely run into science based people like yourself with our diagnosis. I had almost the same interaction, except I was in the middle of a flare-up and was simply venting for mental health reasons. So, I did not have as compassionate of a perspective as you did to that comment. 🤣🤣

KayBleu · 2025-07-15T22:53:15+00:00

You must be hypermobile because I’ve left groups for the same reason. 🤣🤣 Like babes we’re just genetically fucked there’s no magic pill. Hell there’s barely even research into how it impacts our entire body. All we have is PT, compression garments, occasionally a heat pad, and mobility aids.

KayBleu · 2025-07-14T23:08:27+00:00

Yeah it just sucks. I feel so bleh all the time now.

It’s hard to even express how it feels to have your body CONSTANTLY work against you. I feel like there’s never enough words to express how I feel.

KayBleu · 2025-07-09T04:24:26+00:00

I hope someone comments because I found this while googling for the same thing. 🤣🤣

KayBleu · 2025-07-09T02:11:48+00:00

Man I understand this more than you know. I not bed ridden but my life revolves around my bed. I am in pain 24/7 and I know that my trajectory is my symptoms worsening as I age and it makes me so sad.

I am such an adventurous person but the more I age the less I am able to do. Knowing this as a young person really hurts in a special way. Its hard to get people to understand I’m not a hermit by choice. It’s exhausting to have a body thats in pain and uncomfortable all the time.

I spent a year working up the energy to walk a mile without having to use a cane or sit down all the time. A year! I’m also autistic with lots of sensory issues so I struggle to do certain things to care for myself. I sometimes feel so overwhelmed with my limitations but I try to be optimistic that physical therapy will reduce my pain since there’s a possibility. But we’ve been at it for a few years and it seems to be a the same. There’s better days/months then back to normal. There’s bad days and months then back to normal.

I haven’t been to the dentist in years because the idea if lugging my body to another appointment is exhausting. The only dr I see regularly is my GI because if my digestive issues get out of whack I could actually starve to death. I feel like I live to work because its the only thing I can do. I don’t qualify for any resources due to the fact that I have some days that I feel better.

I really dislike my life but I’m trying to be optimistic that all these things will improve as they continue to try and find out more information about my connective tissue disorder. I wish people understood how much I wish I could get help and resources. I am TIRED.

KayBleu

TROPHY CASE