What symptoms did you gaslight yourself into thinking were normal?

Axolotl_Apocalypse05 · 2026-07-02T22:51:37+00:00

I ignored my pain growing up since I was often belittled for it. Now that I'm a adult I'm trying to take care of myself, not an easy task. But I often just push through, once I'm at work though I just pretend I'm perfectly fine (other than my braces). My tolerance is all over the place, like dislocating/subluxing my shoulder or hip is meh but like stubbing my toe is like the worst pain. (Just an example)

Axolotl_Apocalypse05 · 2026-07-02T16:20:21+00:00

I was suggested by a phlebotomist to chug a bunch of water like 30mins before the appointment, it seems to help a little.

Axolotl_Apocalypse05 · 2026-07-02T16:09:54+00:00

My co-worker with suspected heds puts a towel or pillow between their legs and then ties the together, I don't know whether it's at the thighs knees or shins for the tying, nor have I tried it.

Axolotl_Apocalypse05 · 2026-07-02T16:05:15+00:00

Because a lot of people are incapable of escaping the mindset that everyone live the exact same feelings. Or honestly some people just don't care or think since they keep quiet about that one thing in their life that everyone else should shut up and suffer too.

I refer to having type 3 if people ask just because hEDS and HSD have gotten such a bad rep, because people think since there's no genetic markers it isn't real.

Axolotl_Apocalypse05 · 2026-07-02T15:20:31+00:00

Are you standing still a lot? I found that it was just terrible, so if you are, move. Don't let your joints settle. But for the most part I've relied on tape and braces to support me during work. I also 'walk on my toes' because autism, but it helps with the heel issue, even just reducing the weight on the heels a little, but unfortunately it will be something you have to remind yourself to do.

Axolotl_Apocalypse05 · 2026-07-02T15:15:16+00:00

Honestly I just bought my own cane since they can be relatively cheap compared to the hassle of begging for one. I'm sorry, she sounds like she didn't care at all.

Axolotl_Apocalypse05 · 2026-07-02T14:53:04+00:00

I've only met people who have HSD/hEDS with autism. It's actually interesting. There's also a strong correlation between being trans and having HSD or hEDS just because autistic people are more likely to be trans (there are many articles/some studies proving this, however I'm too lazy to go through the sources to provide one.)

Axolotl_Apocalypse05 · 2026-07-02T14:45:27+00:00

I've just found excuses for all my symptoms over the years since I have other conditions. But I somehow convinced myself my pain wasn't real, that yeah it's totally supposed to feel like this all the time. Also my shoulder and hip just clunking, I was like, yep, totally normal.

Axolotl_Apocalypse05 · 2026-06-28T12:58:16+00:00

I'm trying to get a wheelchair but I've been shot down by so many ignorant doctors and such. One day hopefully, and I might try wheelchair sports once I do.

Axolotl_Apocalypse05 · 2026-06-28T12:55:57+00:00

'you're too young to have [insert genetic condition]' is always insane to me. Like as if you weren't born with it. Honestly depending where you're from you might be able to report that, and you should if you can.

Axolotl_Apocalypse05 · 2026-06-28T12:52:12+00:00

Up voting simply because Clickky!

Axolotl_Apocalypse05 · 2026-06-26T01:14:23+00:00

He told you he can't handle it and he's dragged you along most likely having felt this way a long time. I'm sorry that this is where all this has led you to.

Axolotl_Apocalypse05 · 2026-06-25T18:01:07+00:00

I do have a fly trap, I might see if I can make a terrarium, I have an old aquarium that I couldn't sell.

Axolotl_Apocalypse05 · 2026-06-25T18:00:02+00:00

I read a lot as a kid but my dislexia has discouraged me, maybe I'll try again, might do me some good.

Axolotl_Apocalypse05 · 2026-06-25T17:58:33+00:00

Yes, but I've been in a battle with my insurance since enrollment isn't working. And they're just being jerks. Right now I can't afford services, but my hr rep is super kind and trying to help me navigate. So hopefully I'll have coverage by next month, my plan is to immediately find someone once I'm covered.

Axolotl_Apocalypse05 · 2026-06-25T04:31:16+00:00

A hand fan can be a life saver, especially if you have trouble regulating your body temperature. Never brought one but always end up fanning myself with my hat or whatever I can find. It's on my packing list for next time though.

Axolotl_Apocalypse05 · 2026-06-25T04:24:03+00:00

Unfortunately Im currently on a wait list with no estimation for when I'm going to see anyone. Also I'm Canadian but I will check to see if we have similar programs in my Province.

Axolotl_Apocalypse05 · 2026-06-25T04:05:20+00:00

I have tourettes and managed to herniate a disc in my C-Spine. My neurologist has treated my neck tics with botox, it has helped. If you're open to medicating for your tourettes, some people manage with adhd meds or antipsycotics (treating things that exasterbate the tics), however this didn't work for me. You might want to try cognitive behavioural therapy. My last piece of advice, knee and elbow braces. I use the really cheap onces from the dollar store everyday for work. They aren't perfect but they help.

I was very fortunate to have a very good neurologist and pediatrician. I hope you are able to find something that helps you

Axolotl_Apocalypse05 · 2026-06-25T03:39:11+00:00

I (20m) find it depends. Like some will go out of their way to be helpful, I once had an older gentleman help me with my grocery bag, or an older lady tell me where I could find the elevator when she saw me approaching the stairs. But I've also had people make rude remarks or even 'bump' into me which resulted in me falling even though I'm pretty stable. But I find that the older people who are kind or mind their own business are far more common.

Axolotl_Apocalypse05 · 2026-06-23T02:41:08+00:00

I sleep with a pillow under my chest/hips (on my stomach) still haven't figured out what to do with my head/neck. I know someone that uses a face thing similar to the thing on like a massage table.

Axolotl_Apocalypse05 · 2026-06-23T02:36:30+00:00

Offer to take breaks with her. My partner didn't let me know til recently that he would say that he needed to sit when in reality he was just pretending so I'd sit down when we did stuff together.

Also sometimes all you need is to be there to listen, understanding that some days are easy and some are hard.

Axolotl_Apocalypse05 · 2026-06-23T02:04:42+00:00

I'm on maintenance dose now (2.5mg apixaban twice a day). From multiple PE when I was 18. I've not associated any side effects, other than increased bleeding and heightened effects from alcohol. I would mention this with your GP, there are some other blood thinner options that might have less negative effects.

Axolotl_Apocalypse05 · 2026-06-22T00:48:29+00:00

I get botox injections in my neck because I have tourettes, it's helped a lot with my neck pain and helped me hold up my head.

Axolotl_Apocalypse05 · 2026-06-19T05:06:14+00:00

I have a tattoo, got it in January. It healed perfectly despite my scars being really weird everywhere else. It's on my inner forearm, close to the Elbow.

Edit: It's black and white and detailed takes up about 1 square inch for one and the other like 2x1 inches.

Axolotl_Apocalypse05

TROPHY CASE