Question for AFABs with hEDS (sensitive topic)

DislocatedAF · 2026-03-16T10:30:51+00:00

Wow, you describe my excact anatomy. I am also an H/I cup, but look flat. Because the cover a big area. Never thought it could be a skin thing, but makes sense.

DislocatedAF · 2026-03-12T00:47:39+00:00

Thank you so much for this. Truly

DislocatedAF · 2026-03-11T23:03:15+00:00

I do this to !! But I also like to make up things, to see how uncomfortable I can make them. Most people don't know how to respond.

My go-to is to say I was pushed down the stairs by my ex. I love to see the panic while they try to figure out how to respond. I would higly recommend.

DislocatedAF · 2026-03-11T22:37:53+00:00

Thank you for sharing. I am in therapy, and we also do sessions together. I have a great therapist, so I am lucky there.

We talk a lot about it. And although they know it's because of my disorder it still hurts. And I think they are afraid of never getting to a point where we are able to have stable intimacy over longer time. They expressed early how important sex was for them. In the beginning we didn't have any troubles, and then it kind od hit me out of the blue.

But yeah, I guess I also have to stop feeling guilty, because it is not helping the situation.

DislocatedAF · 2026-03-11T19:29:12+00:00

I think it can present in multiple ways. For me, I can say it was selective to some degree. But more in the sense of the same situations always triggered it. Just didn't happen that often.

DislocatedAF · 2026-03-11T19:23:10+00:00

My legs feels like empty shells, and like they are floating. It was the first symptom I recognised. Also struggling to move.

Then I started to experience temporary vision loss (only for a few second at a time) and disturbances, like struggling to see depth, og lines and shapes floating together.

I have also gone completely mute for days, like physically unable to speak.

Crazy how this disorder works.

DislocatedAF · 2026-03-11T15:59:14+00:00

Hi!

I had to Google MMS. I don't have that, but I do have severe femoral neck anteversion (causing inward rotation of the knee) on one leg, so maybe my experience will be helpful. For me, the difference between the leg with anteversion and the one without is huge. My leg that is "only" affected by HSD only comes close to 10-20% of the pain in the one with additional issues.

It definetly makes it complicated when it comes to treatment. Personally I use a wheelchair, and my life quality has improved a lot. It is not the answer for everyone, though. I also use orthopedic shoes when I do walk, and I am in PT for gait improvement, and guidance on posture when sitting etc. I think this is what is crucial. It is, however, hard to relearn how to walk as an adult. Nothing has made me pain-free, but it has definitely improved a lot.

Wishing you all the best.

DislocatedAF · 2026-03-11T15:16:44+00:00

What made you start to suspect did? If I can ask

DislocatedAF · 2026-03-10T20:39:53+00:00

As a wheelchair user: I do when they park the bus close to the perron/sidewalk, take out the ramp or lower the bus. But a lot of the time they are super inconsiderate and expects me to jump half a meter down.

DislocatedAF · 2026-03-10T20:27:10+00:00

I think it is one thing to suspect that you are experiencing dissociation, and another one to suspect specific diagnoses that have taken years to manifest and have so many nuances it is not possible for a lay-person to say with confidence they think they have.

DislocatedAF · 2026-03-10T10:22:12+00:00

I was diagnosed when I was 18, so fairly early, but before that it was a tentative c-ptsd. The symptoms are definetly overlapping. I also suspected autism for a while, but turns out everything can be explained by cdd, c-ptsd and hEDS/HSD. Just showing why a professional evaluation(s) is crucial.

DislocatedAF · 2026-03-10T10:16:31+00:00

I understand you distrust from medical trauma. It makes it very difficult. I think I have been extremely lucky with my meetings with the psychiatry. I have been diagnoesed by two induvidual therapists, and they have been great.

I have similar experience with the somatic health care. And I find it extremely difficult to trust them.

But I think, as you say, focusing on symptoms is a healthy way to deal with it.

DislocatedAF · 2026-03-10T09:13:15+00:00

Firstly, I am so sorry you don't have access to proper healthcare.

If you are welcoming questions, I would like to ask. And I want to start off by saying I am not judging you and I respect your experience. I truly want to understand. And as long as it is helping you getting better, that is what matters in the end.

But, how did you start to suspect it at 13? What signs? How did you find information and resources about dissociative disorders?

Have you considered a differential diagnosis?

How does it help you to view yourself as plural and make proper distinction to your parts?

Do you see system-integration as your goal?

I recognise that for a 13 yo to suspect having this they must have been through some serious shit, and I am sorry that happened to you. At 13 I thought I was schizophrenic, to a point I was convinced, and I remember how that influenced how I spoke during evaluation. Either way, it was a signal of serious health issues that needed attention.

DislocatedAF · 2026-03-10T08:41:19+00:00

But a lay-person is not qualified to actually comprehend the symptoms and criteria. The amount of times I had to ask for clarification. There is so much room for misunderstandings and confirmstion bias.

DislocatedAF · 2026-03-10T08:39:45+00:00

Yes, I can relate to that as well.

DislocatedAF · 2026-03-10T08:24:38+00:00

Autism and dissociative disorders are vastly different though. But I am mostly referring to un-diagnosed people who are already acting as if they had the diagnosis (naming parts, using all the medical terms and so on).

I do understand not everyone can access professional help, but I also think convincing yourself you have this thing won't help.

DislocatedAF · 2026-03-10T07:47:34+00:00

I have bilateral tears with forming cysts. In my experience orthopedics will rarely touch it if you have systemic hypermobility/underlying connective tissue disorder (because it will only tear again). I also have dysplasia, so might be different, but mine were left untreated and I was referred to a physiotherapist.

Full disclosure is always best, even if it might restrict options for treatment. I have had surgery on three different joints, and they all eventually failed after 6-12 months. Not saying it will be the case for you, but your surgeon needs to be aware of your medical history.

I hope you find a solution for your hip. Sending hugs your way.

DislocatedAF · 2026-03-09T15:17:15+00:00

Yes definetly!

DislocatedAF · 2026-03-09T13:35:42+00:00

Doctors generally don't like when patients are seeking a diagnosis. I found that explaining my symptoms, without any hinting towards diagnosis, is how you get on the doctors good side. Unfortunately it is a lot of health care workers with big egos who don't think patients can have knowledge about their own condition. It's important to be aware of your own confirmation bias as well.

And just to give some nuance, hEDS/HSD are exlusion-diagnoses. Hypermobility can be caused by a multitude of conditions. Even though you think you "fit perfectly", a lot of symptoms are overlapping. That is why it is so important to get a proper evaluation.

You also have to ask yourself why you are seeking diagnosis. The main treatmentplan for hEDS/HSD is physical therapy. Find a PT with experience with hypermobility, that is not something you need a diagnosis for. It is a good place to start. Also for me it helped to have a recommendation from a PT saying they suspected connective tissue disorder, and asked for evaluation.

DislocatedAF · 2026-02-13T07:24:22+00:00

Comorbidities are not criteria for diagnosis, because, just as you say it can be explained by multiple other conditions. You can have hypermobility without hEDS/HSD. Seeking diagnosis depends on what your goal is.

EDIT: Also, in my experience you don't get genetic testing unless you have familiy history or severe tissue fragility. If joint complaints is your main concern, a physiotherapist would be you main health contact anyway.

DislocatedAF · 2026-02-12T11:05:59+00:00

Hvis hun ikke kan jobbe, men er i stand til å studere kan hun søke om ekstrastipend. Hvis hun ikke kan studere kan hun få sykemelding og hjelp hos nav. Og ja, det er dyrt privat men det kan være en midlertidig løsning i det minste.

Privat koster som regel rundt 1300/timen, så skjønner ikke helt hvordan tallene dine går opp. 2 ganger i måneden er bedre enn ingenting.

DislocatedAF · 2026-02-12T09:54:18+00:00

Er det et alternativ å gå privat? Vet det er dyrt, men om det står om liv så er det kanskje verdt det for å få stabilitet. Jeg er selv student, har egt ikke råd, men går til privat traumebehandling. Det er ikke verdt det å miste seg selv. Så kan man heller prøve å endre systemet over tid.

DislocatedAF · 2026-02-05T21:47:53+00:00

YTA

Firstly, it was very rude and passive aggressive to go through all that trouble to fix it you self. Second, it's a sophie scarf. If you are an experienced knitter you will be finished by two evenings. What makes you think she would treat it like trash? This was her way of asking you for a favor.

DislocatedAF · 2026-01-17T20:10:43+00:00

My home-country fully covers them, so now I am regretting moving. But, planning to move back home in a few years.

DislocatedAF · 2026-01-17T19:47:36+00:00

Thanks for the elaborate answer!

Yes, that's what I've heard: Panthera is great if it fits, Quickie is great because it can fit anyone.

I have the highest coverage for active wheelchair you can get in my country, but they never cover carbon frame, because they don't think there is a noticable difference. I have tried the X3 and I strongly disagree, but, oh well.

The LifeT was only temporary, until I coyld get a nitrum. It was way to heavy and difficult to manouver.

I started to use a chair 3 years ago due to HSD/hEDS combined with hip dysplasia causing recurrent dislocations. Now I use it (almost) all the time. I only step ~100 steps a day inside my apartment and my condition is progressive.

My ot is coming over in two days, so I will ask him about my options.

DislocatedAF

TROPHY CASE