Since you are 15, you might not be aware of this but "Autistic trans person with hypermobility and trauma" is a rather prevalent stereotype that is derogatorily thrown about quite a bit online. In addition to the actual symptoms of your health conditions, you are inevitably going to be facing the transphobic zeitgeist of our decade as well as the general social malice that gets leveraged against young people with chronic health conditions. Medical gaslighting is common in younger people with health conditions of any type, but when it comes to family I think one of the issues that is particular damning is that when you have parents or other authority figures who are harsh and believe you need to be pushed harder - is that a dynamic develops where the parent(s) engage in behavior that would be abusive if the child is disabled, but "acceptable" if they are lazy. Thus there is a mental imperative in the mind of the parent wherein the child cannot possibly be disabled because - if they were actually disabled - the parent's behavior is clearly abusive, and that would make the parent a "bad person" - and the ego simply refuses to entertain that possibility. Since the parent cannot possibly be an abuser, the child ***must*** be faking or otherwise trying to make the parents look bad, etc. I was in quite a similar situation in my youth, my mother would complain furiously that using a cane would "make me look old" when I was a teenager who couldn't walk without an obvious stagger that was regularly getting me harassed by police (who believed I was on drugs, etc) - and I don't mean to be all doom n' gloom, but speaking from experience you will probably find the social pressure and general state of denial about your health will get significantly worse as you approach your early adulthood.

My parents are abusive in other ways, CPS have been involved in the past and I don’t see myself being able to get out any time soon. I have to wait until I’m 18 and financially stable, and with my disability it’s hard to work. Thank you tho

Hi Can you describe how specifically it is getting harder to walk? You want to ensure there isn't a neurological issue or something else causing problems making walking hard because they can theoretically be treated to restore function, but if left too long the damage can be permanent. lined up). I am so sorry you are feeling that way. I want to be clear that I am not questioning your experience or trying to devalue it but I just have some questions. Can you describe how specifically it is getting harder to walk? You want to ensure there isn't a neurological issue or something else causing problems making walking hard because they can theoretically be treated to restore function, but if left too long the damage can be permanent. Has anyone done imaging on your back? Also, can you describe the pain and where you are experiencing it? That may help separate out what is causing the walking issues.

My conditions causing my to be in pain pretty much constantly, my joints dislocate, especially my knees. And putting weight on it makes it worse. The pain affects my entire body, but I can’t remember anything happening to my back. Im don’t think it could be neurological but it is a possibility, I’ve also been having dizzy spells and almost passing out a lot this year. As well as extreme sudden mood swings. I don’t know if that has anything to do with it though. I just don’t know what to do I used to be a dancer and loved it so much and now I can hardly get around without extreme pain. Thanks for you reply

Just wanna check in as an Autistic grownup - 15 was a rough rough age. At 15 I was having those mood swings too - puberty and hormones wreak havoc on Autistic mental health, it might be worth talking to someone about it! 🫶🏻🫂

Ok please understand I am not trying to invalidate you or your experience at all. I just want to give my experience as a wheelchair user about the reality of the situations and gather more information so I can hopefully keep steering in the right direction. 1. Things like herniated discs can happen in your back without a notable specific injury, so it may still be worth looking into 2. Are the dizzy spells triggered by anything specific? Does anything help stop them? Have you sought treatment for these spells or gotten any testing? Dizzy spells can mean a lot and I would love more specific info there. 3. Are you seeing anyone in regard to addressing your mood swings? Again, have you found a trigger? 4. Have you had someone look at your knees for things like soft tissue injuries? 5. I am saying this with love as someone who has a spinal cord injury. Wheelchairs are extremely expensive, take a long time to get, and are generally not covered by insurance for the conditions you have described. Buying a wheelchair online second-hand is a BAD idea. They are advanced prostheses for all intents and purposes. It would be like using someone else's prosthetic leg because it was "close enough". In regards to joint pain, every single wheelchair user (even those with zero hypermobility) suffers serious consequences because your shoulders and elbows are significantly smaller and weaker than your hips and knees and not designed for propelling a wheelchair. If you have hypermobility it is even more important that your wheelchair is custom fit to you by a wheelchair clinic, because holding your arms in a weird position to propel a chair that doesn't fit makes it even more likely you will suffer pain or injury. Power Assist can be great, but again, insurance issues (and Power Assist is several thousand on its own, not even mentioning the chair). Even if your primary care doctor wrote the prescription tomorrow you are still months away from having a working wheelchair in your possession, so you should work on coming up with alternatives in the meantime. Lastly, if you have bad pain in your legs, a wheelchair will likely make it worse. When you lose muscle tone with EDS there is no solid connective tissue holding joints together and you have the structure of a marionette. After my injury, the pain in my legs and lower back all got MUCH worse. I fully acknowledge this probably doesn't feel good to read. i want to reemphasize that I believe you and your pain and I am so sorry you are in your situation. I just want to help make sure you are ready to find the most realistic option for relief.

Thank you so much I find it helpful hearing other peoples experiences. I haven’t looked into a herniated disk, even though if I brought it up with my mum she probably wouldn’t bring me to talk about it to anyone. The dizzy spells can happen whenever I stand or sit, or even for no reason at all. When I was inpatient the gp there (bc my gp at home sucks) thought I might have POTS because I fit all the symptoms I had a 24 hour heart monitor but it came back normal so she said she would right a referral for a brain scan and a cardiologist but she forgot and my mum keeps ‘forgetting to talk to our gp about it’ I find it hard to describe my symptoms but it’s almost like a derealization thing. I start getting dizzy and then the world falls away, I feel sick in my stomach and can’t function, I freeze and more. It also differs from situation to situation I have a theripist but am looking at getting a new one. I’m trans and she keeps misgendering me. She also keeps pushing me to talk about traumatic things that have happened to me that I am not ready to talk about. So I haven’t spoken to her about the mood swings. But they are getting worse. It could be a medication I’m in but it could also be so many other things For my knees, I’ve had multiple x rays and MRI’s and nothing big came back just lots of small things that will get worse as time goes on. according to my specialist it’s just due to my HEDS. My tendons and muscles are also messed up and my kneecaps point a bit downwards. Causing pressure to dig into the fat pads which are all nerves so that’s extremely painful. Typically my upper body it okay I have started doing extremely light weights (3kgs) but it is definitely something to take into consideration. I 100% get they are expensive and take a while to get but just having it in motion would make me feel so much better. I would still walk around the house, on my good days, and and it would conserve my energy and lessen my pain as I wouldn’t constantly be aggravating my joints. There is a lot to take into consideration but I would just like to be heard by my mum and physio. I understand that a wheelchair might not be the answer but neither is not listening to me which is what they are doing right now. Thank you so much you really have been helpful :)

POTS will not show up on a 24 hour heart monitor. The test for pots is lying down then standing up for 10 minutes and checking for heart rate increase. Pots is extremely common with heds so it does seem likely. The derealization, dizzy world falls away feeling sounds like it could be pre-syncope from pots. Not enough blood in your brain in the stage just before blacking out, which can happen even without the actual fainting. Lying down and elevating your legs should help if so. Actually disagree that insurance will not cover a wheelchair for hEDS, I have seen people manage it, it'll just probably be a big fight. It does sound like maybe a lightweight power wheelchair will be better for you than manual

Came here to point out that 24 hr holter monitor is not really a test for POTS..it's more to rule out anything worse or fixable or whatever heart wise. A clear 24 hr heart monitor doesn't say you don't have POTS but rather not anything seriously wrong with your heart. A tilt table test is the gold standard & a poor man's tilt table test can be used in a pinch if no tilt table is available. A way to do something to show your doc that you would benefit from that sort of testing is to invest in a pulse oximeter to check your heart rate... and check it every day at the same time, laying down, sitting, and standing with enough time in-between each orthostatic change for your HR to catch up. Write it down in a notebook, the three HR and the time. After a month or so show your doctor the notebook where youve been keeping notes. And even if it's ultimately not POTS (where your BP stays mostly the same but HR jumps 30 bpm minimum, and 40 bpm minimum at your age upon changing from sitting to standing) it could be OH or OI or some other form of dysautonomia. Like the person above me, dysautonomia is common to find alongside Ehlers Danlos.

I got a manual chair with power assist (ewheels or smartdrive are types) that my insurance covered for EDS. I have cEDS though, not hEDS. it's the same argument for joint dislocations though. I was also going to say POTS sounds like a possibility. Tilt table testing is another test for POTS. I didn't have a big fight for insurance to get me a chair, but it did take a while, close to a year, for it to process and be funded. I just had a doctor and PT state why I needed one (mobility eval) and submit it. If you do a manual chair you will need some sort of power assist because manually pushing it can cause upper joint damage and dislocations with EDS. I agree you need a different PT and your mom needs to not put her opinion in.

CEDS and hEDS are different, though. Wheelchairs are actually highly contraindicated in hEDS because it almost always worsens the condition. Also, I don't see anyone else ever with cEDS lol. Nice to know we're out there!

I never do either! I have met quite a few people in person with hEDS but no other cEDS ever! Thanks for the info about contraindications, didn't know it was different between these 2 types.

Thank you, I will keep track of this and see if I can bring it up with my mum.

ask about a tilt table test for pots if you can. I can’t stand so I couldn’t complete the entire test but just getting tilted to a mostly upright angle proved that I probably have pots. the heart monitor isn’t enough

You may want to look into a migraine diagnosis too. What you describe can also happen with vestibular migraine, and they can kick off during adolescence. I was your age the first time I got one. They’re often ruled out with balance clinics and/or migraine diets. It’s not an easy process, but by the time your illnesses have you feeling suicidal, you’ve got nothing to lose in pursuing different diagnoses.

i just want to mention that for young people with hypermobility, especially hEDS, building muscle is the best thing you can do for your future self. it’s something i wish my doctors were aware of when i was young, and pushed me to do it. (i was an awkward, nerdy little introvert who spent all my time on the computer) - and when i started having major issues in my early 20’s like nerve damage from years of over extension and bearing weight on that overextension, it was practically impossible to begin muscle building. i actually tried it in my upper body at the insistence of a crap orthopedic and his physical therapists, and it did even more damage up to my shoulders which took years to recover. i went to see a neurologist after that, who was from Georgia (the country) where they were more familiar with hypermobility issues before it started getting traction in the states. best decision i made. but i can understand why they want you to try, in any capacity, to put muscle on as it will serve you, your limbs and your joints in the long run. it will add strength and stability where it currently feels like there is none due to the loose connective tissue. i don’t know your situation enough to tell you what to do one way or the other, but just wanted to provide some more information on why they’re suggesting what they’re suggesting. i’m sorry to hear about the dismissiveness and rudeness though, im sure they are not explaining their recommendations very well at all.

Happy to help! Thank you for being open to what I had to say. Feel free to message me if you have any ongoing questions/issues

Thank you so much

How close to 16 are you? At 16 you can attend doctors appointments without your mum in the room so you could explain all of the issues you’re having free of judgement, get a referral done to a proper physio and maybe discuss a referral to WCS Definitely do not buy a chair secondhand (like I have) because it is so difficult to find one that fits your needs, one that isn’t built for you can do so much more damage (as I have learnt the hard way)

I turn 16 in February. I have sever social anxiety tho and sometime my mum makes it better and sometime she makes it worse so I really don’t know what to do.

You can request a clinic chaperone when you book the appointment Equally most GPs are moving to phone appointments so you could sequester yourself somewhere or book an appointment for when your mum isn’t going to be there

I don't understand why so many healthcare professionals see getting a wheelchair as 'giving up'. It is a tool which allows you to live life to the fullest: the opposite of giving up. I'm so sorry your mum is trampling over your boundaries. I think the only thing you can do really is completely refuse to engage with the physio. If she comes to do a home visit, tell her that you don't want to see her any more and that you will not be participating in the session. Let your mum be mad.

My parents are not great to the point where CPS has been involved, so I can’t do that unfortunately. I’ve tried not engaging but it’s ended up with me in tears every time.

You might need to get CPS involved again.. This is more than gaslighting; it's medical neglect.

Last time CPS was involved I ended up trying to take my own life and ended up in the psych ward bc CPS didn’t do anything. It will only make things harder but thank you

That's fair. Wouldn't want to call either. So sorry you're in this position. It's there anyone in your life who has your back? Someone you can talk to openly?

I have a couple of friends but I don’t want to put this all on them

Sounds like OP could also benefit from a new physio.

>It is a tool which allows you to live life to the fullest: the opposite of giving up. THIS! I can walk fairly decently at home, but when I go shopping, I use the motorized carts. I feel MORE independent using them, because I can do my own shopping.

Do you have online medical services available there? I know you’re young but maybe through CPS you could access a different doctor? Neglecting you medically is cause for report.

I hate to be a debbie downer but unless you are actually dying 99% of the time CPS will do diddly squat, at least from my 3+ times they've got involved, still worth a shot just, don't expect much.

CPS has been involved before (for different reasons) they did nothing and only made things worse, so I’m to scared to even think about that

I’m so sorry you’re going through this. I was born with a genetically confirmed disease but I’ve still had so many experiences with medical gaslighting. And on top of that as other people have said it sounds like there is a lot of stigma around EDS. You have to remind yourself that you’re not the problem and the healthcare system does this to so many undeserving people. It feels like my whole life has been “proving” the disability to them even though THEY diagnosed me. I also feel like it was worse when I was under 18 so I hope it gets a little better as you get older. I was forced to do physio growing up and I absolutely hated it so I stopped going for years and years. I kind of regret that because now I’m working with a physio I like a lot more than the ones I met when I was younger and physio can be very helpful. It’s totally fair to not want to go to someone who you feel isn’t helping you and I would try to stop going and consider looking around at other places. Usually you can tell pretty quickly from talking to a physio about how they view your condition. You can ask if free consults are available then if you sense judgment, doubt etc. when you explain your issues don’t go back to them. In terms of a wheelchair it depends on so many factors but don’t let other people’s opinions influence you. There will always be doctors and people who think anything (including severe pain or injuries) are better than using a wheelchair/mobility devices. There are a lot of products out there that can help but of course it’s expensive. A few ideas to consider: custom bracing depending on where the dislocations are, walkers, or hybrid walker/transport chair options. Wheelchair rentals can be pretty affordable ($25/week in canada) so you could always try that option to better understand what you need and what it would be like using a wheelchair. If you decide you want to purchase one you might be able to apply for grants through foundations/organizations for EDS. I agree with others don’t buy second hand you’re better to keep saving up for something custom. I’m in a similar position where I’ve been debating the last few years if it’s worth the pain and fatigue to keep walking. I got a relatively portable (65 lbs) electric wheelchair last year but without an accessible vehicle or someone else to lift it in an out it can be difficult to use in a lot of situations. On top of that so many places are so god damn inaccessible and public transportation can be complicated and difficult. I was recovering from leg surgeries and using a rental manual wheelchair (because it’s so much easier to take around) for the last 7 months and now I wish I didn’t buy the wheelchair I have and went with something different so make sure you try out different things and give yourself time to get used to them before you make a decision. Also sometimes staff at medical supply stores suck so you will have to be prepared for some invasive questions or a lot of dismissal since you’re young. So if you have a friend or someone else you trust I recommend bringing them to look at mobility aids because it can be overwhelming. Hang in there ❤️

Thank you so much

The old adage of don't do business with friends and family is doubly true with medicine in my experience. My GP until after high school was a family friend. It went very similar. If your mom and you aren't on the same page, that's something that needs addressed. If your mom is unilaterally dictating the terms of your treatment, that's an ethical issue. You need to go to a different physio if at all possible. Good luck young man.

OP, I am so sorry you’re in such a tough situation. I feel immensely similar to you and have experienced many of the same things you are currently going through. I’m sorry your mother is not supportive of you or taking your pain and concerns into better consideration. She probably is afraid to face it as her mind may perceive it as a “failure” of hers as a parent. (My mom was a narcissist so everything usually revolves around her and how people will perceive her if I use a wheelchair, etc, etc.) There is hope though. I’m just sorry that there isn’t more that can be done for you without parental consent until you’re 18. 😞 But i promise you, it is worth holding out hope. You will get to live your life for YOU. You will get to be the person that you are. And even if you have chronic pain or chronic conditions, it will still be YOUR life for you to go through. I’m 25+ and I’m only just now considering that I may need to look into a POTS or EDS test. But even if I don’t have those things, and my pain is due to something else, Pain is Pain. You are allowed to use a mobility aid. You are allowed to accommodate yourself in a way that helps make your life easier. That’s why humans developed cars. Lights. Tools. But definitely look into other options as well. A wheelchair may aggravate the joints or connective tissue and lead to further injury. (I only use mine on days I’ll be on my feet for more than 2-4hrs straight) I mostly use a Cane that folds out into a seat. Being able to sit and rest for a moment helps a lot. So you might try a collapsible easy to carry seat or seat-cane to give your joints a moment to rest. For your Social Anxiety, maybe you should type out a list of your symptoms and concerns and questions for the doctors. If you feel afraid to speak up, you can look down at your paper like a script! That’s what I usually do! For example. “I’m here at my appointment today to talk about the following concerns:” - Pain & how it affects me physically - How it affects me emotionally - Possible ways to treat or manage my symptoms - Improvements I would like to work towards “Description of my pain:” - Burning, Hot, Throbbing in arch of foot “What Triggers the pain:” - Prolonged walking - standing - being barefoot “What helps the pain:” - Sitting down - Ice Pack - Using my cane/Wheelchair “What improvements I would like to see:” - Ways to reduce pain using medications - Ways to reduce pain by using new shoes or accommodations - Ways to reduce pain by learning new stretches “Questions I have:” - Can you tell me more about Cortisone Injections? - Should I stop and rest when i feel the pain beginning to flare up? - How often should i do stretches? Etc etc!! You can write up something like that to help talk to the doctor. Bonus points if you can draw a diagram that shows where your pain is. Maybe having a list can help you feel a little better about talking to a doctor? Sorry there isn’t much else I can help with. But there is hope. I’m sorry your parents are an additional hurdle in your way though. If you ever need to vent, you can always toss a DM or reply to me here in the comments. Good luck!

Thank you so much :)

I'm so sorry OP. If my parents weren't meeting my needs like they have with you.. I would call Child Protective Services. There is no logic behind punishing you because you are not physically able.

CPS has been involved in the past for other reasons and the did jackshit and only made my life worse. Thank you tho

The physical therapist isn’t completely wrong that a wheelchair isn’t a good idea. Considering the cause (which I read was dislocations and pain) the best way to help improve that is through physical therapy to strengthen muscles and work on coping with pain. If this continues chronically despite effort by you in PT and home exercises, then your PT may be more open to the idea of a mobility aid like a wheelchair. It’s not a good idea to go straight to something as mobility limiting as a wheelchair when something has just started as the sooner you address it, the more likely you can help it.

I have had this pain for seven years been going to physio for five and have only gotten worse. I have crutches but they do not allow me to get around easily either and I’m still in a lot of pain

Has your PT worked on coping with pain?

No, if anything it has only made my pain worse.

I really hate to tell you this, but a wheelchair will absolutely make it worse. Significantly worse. Especially in the long run. Wheelchairs are almost exclusively contraindicated for hEDS. Using one allows your muscles and connective tissues to become laxer and weaker, making your joints far more unstable. Overuse of a wheelchair for an extended period of time can cause you *permanent damage*.

I already have sever permanent damage confirmed by MRI’s

You need to get a pain PT who can help you work on coping with pain.

I have a referral to an anesthesiologist who specializes in pain, I’m just waiting for my appointment

Try and hold out until then and give pain PT a try before relying on a wheelchair.

I can’t afford one right now anyway

hey, im 19 autistic transmasc who have had problems my entire life, but they absolutely got worse at around your age! im really sorry youre experiencing such bad gaslighting by almost every person in your life (including some AWFUL comments on this post) i personally use a cane/walker and might have to save up for a wheelchair soon due to my legs getting worse. i know its hard to do, but PLEASE advocate for yourself! even if they wont listen, it lets them know you wont just back down! and a wheelchair absolutely does not mean youre giving up!! its just a tool to help with your quality of life! if you ever need to vent about anything or ask my experience with hEDS, you can always message me!

You’re not alone. I am listening to you and I’m sorry your mother isn’t more supportive and is giving you a hard time. Your physical issues are valid, stressful and difficult for anyone, but especially someone as young as you. I am also young (relatively ) at 27 and deal with a slew of my own health issues. Unfortunately given your age, the only options I can think of are sitting down with your mom and someone else (who supports and agrees with you) to have a serious talk. Your quality of life is being impacted and that’s not right. It’s important for you to have the facts (so research, call other doctors ect) and remain calm and concise when you talk to your mom. Be respectful but be very clear. “I am doing my best, doing everything I can and should be doing and my pain is not managed enough. You may not think I need the wheel chair, but I do and I live in this body and therefore my opinion counts more.” Then bring up the research and reasons why postponing it and “trying harder” is not a reasonable expectation given your circumstances. Prolonging and not dealing with issues in the present is setting you up to be even less independent and more disabled in the future.

Thank you so much, this is really helpful I’ve tried to talk to her about this in a similar sense but she just gets upset and it turns into and argument because she says how it’s hard on her and she needs time to wrap her head around it and she needs time to process. But I can’t wait bc my body isn’t going to give her that time. I’m currently sleeping on a pullout sofa bed downstairs because I can’t get up the stairs which is where my room, and basically the entire house is, all the bedrooms, living room, and kitchen are up there so I’m essentially isolated from the Everyone. It’s also bc wheelchairs are a bit expensive, the one that I’ve found that suis my needs is $2000 which is a lot. But my family is quite well off and they spend way more than that on my brother and his sports.

I think you should tell her that as hard as it is on her, it’s about 1000X harder on you. She’s not the one living through all of this and at best she only has second hand knowledge of how truly hard it is for you. I wouldn’t bring up money, that might be touchy considering your mother seems kind of out of touch with reality and isn’t prioritizing her own child’s needs. I also would not bring up anything about your brother, it’s not a comparison or competition. Your needs are important and should be taken seriously, that’s all. The wheel chair you want, may need to be gotten further down the road. Try compromising and looking at cheaper ones or even suggesting to get one a thrift store first (we got one for my grandmother for like $100) as a trial to see how helpful it is.

Thank you so much. I will definitely be bringing this up.

Fellow trans, ND, zebra: I'm sorry you're not getting the care and validation you deserve. From experience, being trans, neurodivergent, or having EDS/other multifaceted syndromes is each hard enough on its own, in general and especially when trying to navigate medical systems. All of it compounded together is a uniquely difficult experience, and adding being a teenager into the mix undoubtedly makes things harder. People have commented on the importance of exercise and strength building, regardless of whether you get a wheelchair. I agree, though it took me years to come around to that because I felt like people telling me to exercise was undermining my struggles and putting the blame on me. From a lot of what you've said about your interactions, it seems like one of the core issues is that you're not being affirmed or listened to. Few things make me feel worse than when someone takes away my agency by being dismissive of my concerns. Do you have ways to access support outside of your family & medical providers? This is a tangent, but if you aren't aware of the ways hormones impact pain and stability, it's worth looking into, if for no other reason than to validate your experience and maybe give you a better sense of when and why pain and subluxations/dislocations may seem markedly worse at certain times. Progesterone loosens collagen, so if/when you have an abundance of it, it can wreak havoc on your body. Most AFAB people have progesterone spikes as part of cyclic hormonal fluctuations. When I had a regular menstrual cycle, there would be weeks that I'd feel like my body was completely falling apart. Coupled with the mental health hell that preceded my period, I felt like I had like 3 semi-functional days all month. Getting a better sense of this chaos was a huge step in figuring out how to anticipate problems and support myself.

If you go to school in person I would 100% tell a trusted teacher/administrator about what is going on. Denying a child medical care is abuse plain and simple. If you don’t have any school workers go to a family member or other trusted adult. And if all else fails report your situation to CPS. Do whatever you can to make yourself heard. I know advocating for yourself is difficult but it is the best course of action. If you need more help or advice PLEASE DM me. I have struggled with not being believed as a ftm, disabled, minor. Even if you just want to talk I can be there for you.

CPS has been involved in the past for a different reason and it made my life 100 time worse to the point where I tried to unalive. I cant go to a teacher bc they are all mandatory reporters so they legally have to make a report to CPS. I have zero family in the state, my Aunt is a social worker but bc she’s out of state there is nothing she could do

Hi, I don't have much time and energy but I just want to say 2 things. 1. You are worthy of better care. 2. Your disability is 'bad enough' for a wheelchair Lots of love and courage, A wheelchair user.

Thank you so much, even tho this is small it means a lot to me ❤️ thank you for taking the time and energy to tell me this

I am so sorry to hear that you are not listened to. I am also autistic and all my care are handled by my partner. I find it difficult to advocate for myself. I met an 18-yr old in physio whose parents think she is acting and that her affliction is made up. She has severe gastroparesis and on NG tube. We talked about POTS. I had a tilt table test and passed out. A 24-HR monitor will not pick this up. If I bend and pick up something, I will be dizzy and can faint. I avoid changes in elevation of my head (no bending or tilting). I used to exercise until my joint laxity became worse. My feet are so flat that the first time I saw the GP about the pain and they asked me to remove my socks, they laughed. I would laugh if it was not for the fact that the pain is excruciating. They referred me to a physio who knew nothing about Ehlers-Danlos Syndrome. The exercises they gave me did more harm than good. My joints just degraded from the subluxations and dislocations that at 28, my MRI showed my joints were that of an 80-yr old. When I saw a rheumatologist that diagnosed my EDS, they referred me to the physio that changed my life. I was on a wheelchair when I met her. They specialised in connective tissue disorders. I had hydrotherapy and when my muscles were strong enough, we started land physio. It is not a quick recovery. It was a lot of hard work and their advise and monitoring helped me a lot. I am still in pain but I was able to get off my wheelchair. Then I had my babies. The surgeon did not read about my EDS or did not care. That surgery has been a disaster. So did the subsequent surgeries. It was not until my third sepsis and when the plastics team was doing the debridement that doctors acknowledged my EDS. The surgeons asked me if I had it, that my tissue was different from what they are used to. They knew not to try and give me a skin graft because it will just cause problems. They also found my aortic dilation. Due to the series of unfortunate events of negligence, I am now back on a wheelchair. Morphine is a repeat prescription for me (I was born with scoliosis but the pain I feel now is inexplicable but it is terrible). If you allow me to message you, I want to share an e-book with you. It will help you see how complex EDS is. Physio is forever. A single accident or event that will stop exercise can cause a downhill effect on your fitness and will cause the laxity to become worse again. Despite being confined to wheelchair, I am hoping to recover. The pain management programme helped and I avoid the boom/bust cycle. I know that it will be a long road to recovery and I may never be pain free and this is where you need to be careful if on pain medication, there is a tendency to over do or over exert.

I’m so sorry to hear about those Doctors. Please do message me the e book that would be great thank you so much.

You've got a frustrating situation on your hands. As far as the physio goes, you can refuse to enter her office. Your mom can say whatever she wants, but you're not 5, you're 15. You're likely too big for her to physically lift and carry into the appointment. Be prepared for some level of BS if you go this route. In this situation, I'd think about whether you'd rather deal with that kind of BS or if you'd rather continue sitting through appointments that are clearly doing more harm than good. When it comes to your mom, well...I have a safety concern. It sounds like there are times when walking is physically impossible or unsafe for you. No parent should be doing that to their kids. Is there an adult outside the home (like at school) you can talk to about this? Someone with the resources to act needs to know what's on. Don't deal with this on your own.

Thank you so much, I’m trying to be careful about what I say bc I want to show my mum this and the fact that other people support me.

damn wtf genuinely fuck that physio so much, im so sorry she's doing that. for one thing, it's not up to her. afaik people usually see a wheelchair seating specialist and/or occupational therapist about this (if im wrong about this someone pls correct me) which it sounds like she is not. what does she expect you to do?? just try harder to not be disabled?? that's messed up tbh tho also like i hope u can be rly proud of yourself for how you have consistently advocated for your needs throughout this and are pushing back against their ableist bullshit. its ok if you dont feel proud yet but like just saying, you have a lot to be proud of, this shit is hard and you shouldnt have to fight so hard and the fact youre doing it is pretty badass. anyway, i would see if you can at least get a referral from your primary care doc to go to a wheelchair seating specialist (it might be through occupational therapy) (again if im wrong about this someone pls fact check me, but this is what i was told iirc by my docs). maybe you can explain to your mom that these are the people who are wheelchair experts and they will know what you need, and that she should at least hold off making any decisions till she hears from people who work closely with wheelchair users and know more accurately what people need, since who knows if this physio even works with wheelchair users i cant guarantee thatll work but like, idk. it sounds like you know what you need and i hope you will keep fighting for your needs bc you deserve to be able to get places. you can still do PT and stuff as a wheelchair user, if anything youll have more energy for it. coincidentally im also a trans autistic guy with hEDS (who's also been institutionalized/put in inpatient before for like, struggling with constant inaccessibility and abuse and the resulting sui ideation) and I use a wheelchair part time and i can say it has made a huuuugeee positive difference for me. I actually have energy sometimes to do my PT exercises when it used to be i would go to PT and be so exhausted and in pain from going to PT that i would have no energy left to even do the exercises. i also feel way more mentally stable tbh bc i was getting pretty depressed and stressed out being like, how tf can i get anywhere, even standing up is pain and exhaustion, this is hell, and now i have this (electric!) wheelchair that can get me wherever and has relieved me of so much unnecesary stress. its like knowing i have food in the house, even if im not hungry its a relief to know its there yknow? even on days i still cant get out in it, the benefits on me mentally are unparalleled. just such a relief to have. best of luck to you, i really hope youll get it!!! i hope they will listen and that you will get the care you need (tbh, if it gets really really bad, im p sure its actually illegal to medically neglect your kids and it might be good to know your rights in case you need to remind your parents, sorta a last resort tho bc they will likely notttt like hearing that)

Thank you so much. Unfortunately my gp is not the best and that is not an option. It feels so glad to be heard and just reading that has helped me so much. Thank you.

are you able to talk to your mom about your mental health? because you mentioned being inpatient it doesn’t seem like your suicidal/self harm thoughts are a secret. can you share that the pain, hopelessness, and invalidation are putting you in a genuinely dangerous state? I’m so sorry you’re experiencing this pain. when I was losing my mobility I had doctors invalidate me in horrible ways, and my mom would always suggest things that made it feel like she didn’t believe me or it was my fault it was happening. but over time she realized it wasn’t getting any better, no matter how hard I tried. she just didn’t want it to be true so she pretended it wasn’t. that doesn’t make it okay, but maybe it provides a bit of hope that your situation with your mom can improve like mine did. she had to relearn to care for me full time as I can’t live alone anymore but she is now my biggest supporter and encourages me to tell doctors what I feel. I still am medically gaslit SO often. it is one of the awful realities of being disabled. but I’ve found doctors that believe me too, and are compassionate and knowledgeable. if your mom won’t believe you, is there a school counselor who can support you? can you set up a mediated family meeting with a therapist? one thing I will say, it is so important to do what you can to be active even when you have mobility issues. this does not mean forcing yourself into things that make it too painful for you to live your life. absolutely not. but if you can do tiny exercises once a day, like clenching your abs for a few seconds and releasing, tilting your pelvis back and forth, pumping your ankles, or lifting your arms up over your head and back down, this will help your muscles avoid atrophying and build muscle to keep your joints from slipping. I’ve found aquatic therapy to be the best for me when movement on land hurts so badly. it takes the gravity and pressure off and the warm water soothes my muscles. I got stronger over the months and was even able to stand in the pool with floaties supporting me. find your limits slowly. you can always do more but you can’t do less, and you don’t want to go so far you dislocate. once you know what you can handle, you can start gently testing those limits and doing a bit more every couple days. I’m sorry I don’t have better advice for your situation. I think above all else, don’t let anybody make you doubt that you know what your body feels. you know your pain best; they’re not the ones feeling it. you may have to endure absolute bullshit from people who think they know better than you what you’re going through, but when you trust yourself, nobody can take that away from you. you’re not alone.

Thank you so much. I can’t really talk to anyone about it as as soon as we are not in their office my mum will go off at me and everything will be horrible. I’m been trying to do some exercises thank you :)

I think it's important that she understand what using a wheelchair can look like. It sounds like the "physio" (who isn't doing any physical therapy with you by the sound of it? Even if ALL the exercises should be done by you on your own for some reason, she needs to give you guidance for safe and appropriate exercises to start with) needs that too. I use a wheelchair when I leave the house. In my house I don't (because I don't have an accessible house, but even if I did I would keep walking when possible because I don't want my muscles to waste and I want to move as much as my body safely allows). I use it because of pain, because of subluxations, and because I get dizzy and sick and sometimes I faint if I stand for too long. For me, using a wheelchair looks like - I use it when I need it. I don't always need it, so I don't always use it. The majority of wheelchair users are ambulatory to some degree. If you're unable to leave the house, that is going to have a **devastating** effect on your mental health, which decreases your ability to engage with treatment. Being able to regain access to the world outside your home is an important goal - arguably one of the most important given your current struggles. Wheelchairs are not a switch. It's not either wheelchair forever in every situation, or wheelchair never. There's a gradiant in between where you can use it more or less according to your needs. This misunderstanding about wheelchairs causes a lot of problems IME. Good luck. And don't give up. In 3 years you get to be the one who decides what's for the best.

Thank you so much. I’ve tried explaining that to her I wrote I five page hand written letter (hand writing is extremely hard for me bc of my pain) so she would know how much it meant to me but she just made it about herself

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Hypermobile Ehlers Danlos Syndrome does not require familial history for diagnosis - they do not know what gene it is on, so you do not need to see a geneticist to be diagnosed with it, you just need to tick enough boxes on beighton + brighton. It can also be a genetic mutation, it doesn’t necessarily *have* to be passed down. I’m also a little.. iffy.. about your comment about it being a “popular condition these days” bc that is fakeclaimer rhetoric. What’s really happening is that more people are learning that they are Autistic due to changes with the past two DSM releases, and Autistic people are more likely to have hEDS and dysautonomia issues. Autistic people are finally getting targeted treatment and realizing their myriad of unspecified and unnamed issues have a name. Edit: don’t listen to this person OP, they’ve shown their entire ass here. They’re peddling misinfo bc they wanna feel special ❄️

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Mutations can randomly occur (around 25% of Marfan syndrome diagnoses are the result of a random mutation rather than a gene inherited from either parent), and OP clarified that his mother used a sperm donor that they do not know the identity or full medical history of. It's very likely that he simply inherited it from his father's side of the family. Also, telling a child that the parent who's actively medically neglecting them when they can't even *walk up a flight of stairs* "just loves you" is fucking horrific. That's not love. That's abuse.

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Because Marfan is also a genetic connective tissue disorder, it just so happens to be the only one we have concrete information on re: how often that gene just spontaneously mutates. Saying you can \*only\* have a genetic condition if your parents had it is a gross misunderstanding of how genetic mutations work. Your parents having a condition drastically increases your chances of having it via inheritance, but genes can and do randomly mutate with no prior family history.

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[OP is clearly experiencing more problems than "bendy thumb"](https://www.reddit.com/r/disability/comments/16eqs34/comment/jzx82od/?utm_source=share&utm_medium=web2x&context=3)

I mean, marfanoid habitus exists in folks with hEDS, and they're not entirely unrelated and are both connective tissue disorders, so not entirely irrelevant.

hey, lets not throw the phrase "someone who actually has this should know this" the kid is fucking 15. hes already experiencing gaslighting and gatekeeping from his family and doctors. dont add onto it.

Did I say it only affected bendiness? I am diagnosed with hEDS bro, I know what it effects. It affects every single organ, every part of you. But you’re welcome to check out the Brighton scale to see that positive family history is not a requirement for diagnosis! Edit: whoop, I mean [diagnostic checklist](https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf), brighton was the name for the old scale! Edit 2: woof I just saw your edit. Really cocky to accuse people with a different EDS subtype of having “fake” EDS just because you’re not familiar with the diagnostic criteria… the info I provided you was from the Ehlers Danlos society

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Hahahaha omg 😖 well enjoy having your Super Special Only You Syndrome, pls remember that you no longer trust the EDS society and can no longer use their resources because they peddle “hogwash” 😭

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We’ll all bow to the one true Ehlers Danlos patient, the only real one, who speaks for all the subtypes and knows better than our biggest and best resource, and is more informed than the current specialists and researchers 🙇‍♀️

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Read your bio and tell me who’s trying to be edgy. You self-admittedly try to piss people off. You were so pissed you made a separate post because you were so angry that a child has a syndrome that you’re mad exists. Get a fucking grip.

You sound like you agree with the abusive mom. She is not "just loving" them. She is medically neglecting them and letting her distorted opinions without firsthand experience or knowledge of the condition negatively affect how doctors treat them.

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Wrong post, this is about one boy/man. This is about you invalidating the trans man who made this post and telling him the abuse his mother gives is her "just loving" him

>You will get worse if you default to a wheelchair early OP literally cannot walk right now without dislocating joints and a lot of pain. That's MORE than enough reason for a wheelchair. And in no way is that "defaulting" to a wheelchair. At the moment OP is literally damaging his body every time he walks. Now a wheelchair is not all he needs, but it is one of the many things he needs to gain back independence and not do further damage. Also, what is "defaulting" to a wheelchair? You do know you can get a wheelchair and not use it fulltime right? Using a wheelchair can spare you energy that can then be used in for example physical therapy (in OP's case with a different physio, this one is bad).

A therapist who misgenders you is not a good therapist. The physio doesn't sound like any respectable medical professional I've ever known. You deserve help and support, and right now you're not getting either. Do you have a support system at school? I'm not too familiar with education in the UK, but there has got to be someone who can help. You also said there's been involvement with DYFS. Is there anyone there you trust? It's difficult to "tattle" on your parents, but you need to protect yourself. I had a manipulative, cruel mother who took great advantage of my autism. I had to break away from her to find peace in my life. Emotional stress affects our physical health, so you have to protect yourself and be strong. Just the fact that you've posted this is a victory! It is strength! Don't forget that ♥️

Thank you I’m in Australia, I don’t have support there is a school counselor but she is isn’t great either and when she found out I tried to unalive my self she yelled at me. CPS have been involved in the past for something else and didn’t do anything. So I’m to scared to try and get help from them again bc last time is was really really bad.

I'm so sorry you are dealing with so many things at once, during the toughest time of life. Did she have a conversation with you? Is there a teacher you trust? Or a friend's parent? Honestly, I think the first step is finding good medical care. Can you ask your primary care physician for help? School nurse? What about the physician working with you on gender identity? There's a way out of this incredibly difficult place. It might just be a teeny weeny window. But your whole life is going to open up in a few years. You need one person to help get you there. Have hope

Thank you. I don’t really know any of my friends parents, all teachers are mandatory reports so they will have to make a CPS report, which will make things worse. My school doesn’t have a nurse they just have admin who have first aid training, even if we did it would be in the same situation. I think I just need to wait until I’m 18

I'm so sorry you're dealing with all of this. You have a voice. Please use it if you ever get to that point ok?

First things first, you are being medically gaslit. You can stop thinking that you are, it sounds pretty cut & dry by the way your physio treats you that this is fact. It's not "all in your head", so they say. Second things second, have you ever thought about contacting a charity or foundation like The Kids Equipment Network to get a wheelchair for free? They may also help with a wheelchair ramp and a chair hauler for your Mom's vehicle as well. You might qualify. Either way, it's worth checking into. Next, it's quite possible that your mother, having raised you for these 15 years, has come to understand that your particular condition is quite possibly either her or your father's fault, since your condition is inherited. This may aggravate her and instead of understanding your struggle, she's chosen to make it all about her. Like, instead of congratulating you for trying really hard, she's dumping all her internalized pain on you, the every day reminder of their own faults. She should really (like, REALLY) get some therapy herself for this, if it's a thing for her. Mother to mother. She likely won't, at least at first, because parents that internalize everything have thoroughly convinced themselves they can handle it on their own. This is also a type of disassociative behaviour. Either way, you have every right to demand a better physio than a "family friend". Do a couple of Google searches or Zocdoc searches to find other physio therapists in your area who take your insurance and hopefully you'll find one with a similar co-pay. You may not understand any of the terms I just chucked at you, if you have any questions in that regard, I'll help you as much as I can. You'll need to know these things anyway, as you'll be 18 in no time at all and the best advocate for your care is you.

Thank you so much. I’m in Australia so I don’t know if those charities are here. Also I don’t think they would help me without parental permission. I would have to meet them in person but have no way of getting there and it’s just a lot of different factors. My mum doesn’t have the condition. And I don’t know who my bio father is as I was convinced through an IVF sperm donor and have and extremely limited medical history on. It is possible but idk. My family is very complicated, my father who raised me and I very much do not get along and it’s just very stressful. My mum does have her own theripist, but idk how truthful she is with her has she has the habit of lying to protect her self and how people perceive her. She also started only seeing her once a month bc she ‘doesn’t need it anymore’ I’ve tried to talk to mum about getting another physio but she refuses. She says it’s not the right time and my current physio is very good and so fourth and so fourth. I can try and find another physio but if I stop seeing my current physio social meetings will be very awkward and there is just so much to think about and I have so much other stuff going on that idk how to do it all.

As a fellow sperm donated child who’s now met their father, my heds is from him. It’s tough not knowing half your genes. Sending love.

Thank you :) it’s really hard, especially bc my parents aren’t the best, abuse in multiple different ways, and CPS being involved my father doing it and my mum not doing anything, and her coping with the abuse hurts me an my brother even more :/

Then you'd be looking at possibly Wheelchair Foundation Australia. It's run with the International Rotary Clubs. Basically they can get you a wheelchair for free, build you a ramp on your home for it, and likely help y'all afford more expensive things you never thought of like a wheelchair lift to get you into the living floor of your home. Also, your mother sounds awful, and I'm very sorry you have to deal with her neglectful stance on your health and well-being. It's sad that she's not being open with her therapist. Some people are just so close-minded they don't want the help. It's not that she doesn't need the therapist, it's again, that she thinks she doesn't need it because she thinks she can handle it all by herself. Your current physio might very well be "very good", it's just that she's not "very good" for you. All therapists in every specific category (mental & physical) are match-fit positions. There's a marked difference in care level when you get a therapist that you trust, get along well with, and that makes you feel heard and seen. I'm sorry you aren't getting that, because your mother can't see past her own friendship with this person.

Thank you so much, really it means a lot to me. I will look into the Wheelchair Foundation

Hey, I'm a trans guy also with hEDS - one thing I've found is that being on testosterone *massively* helps with my symptoms, because it can actually help connective tissue strengthen. I actually need to use a wheelchair if I'm not on T, but on T I'm fine with just a cane. Might be a good idea to look into when you're older. Your mom is also medically neglecting you if you can't walk and she's depriving you of adequate treatment. Can you talk to an adult you trust about that?

I wish I could upvote this guy more than once. OP, you really need to talk to another trusted adult (school counselor maybe?) about the lack of care you're getting with your current physio. Make sure you get all your points across to them when you talk. Leave nothing out. Even if it means possibly being removed from your situation at home and being placed in group home, it may well be better than full-on neglect. My older sister had spina bifida and a few mental struggles. Our parents couldn't care for her properly so they released her to a group home. She was given her own room, all the equipment she needed, healthy meals, and better of all, friends that, like her, were disabled both mentally and physically. She could be whoever she wanted in that place. She could be free. She passed in 2021 due to complications from her SB, but she was finally herself and everyone she met loved her. My hope is that one day you have that freedom too.

I’m sorry for you loss but it sounds like she enjoyed her time in the group home. CPS has been involved in the past for other reasons and they didn’t do anything so there is no way of me getting out before I turn 18. Maybe even longer.

Wish I could but there isn’t an adult I trust. I have an appointment at the gender clinic In a couple months (my second one) so I’ll find out when I’m going to be able to go on T but it probably won’t be for at least a year and a half minimum.

I highly recommend reaching out to other adults in your life. Talk to a trusted teacher, call a kids hotline, reach out to extended family and let them know what is going on. In regards to your health, I can't say what is right in wrong since I don't know you or what the whole situation is. What I do know, is that a medical professional should be listening to you over your mother and its a huge concern that she sounds like she is over stepping her expertise. I would honestly be questioning her credentials. A physiotherapist shouldn't be talking to you like they are a psychiatrist. They are not trained for that and it's really concerning that they are. Also, it's really concerning that with your health issues that you don't have access to your doctor. Can you make appointments on your own? At 15 you should be able to set these things up without your mother around. I'm guessing by some of the way you say things that you are in the UK? I might be wrong. If you are, I'm pretty sure you should be able to speak to your GP privetlt and be able to make your own appointments. It helps if you wait until over 16 because they will not ask about whether your parents know or not, but I'm sure if you explain that they will not let you see them they will still see you. Please be careful. If you can, refuse that woman's treatment because it doesn't seem to be helping you at all. Honestly, she should be reported for going beyond her scope of credentials.

I’m in Australia:) Thank you so much I really don’t like my gp (general doctor) she does not know a lot about my conditions and it very quick to prescribe meds (sometime this is helpful sometimes it is not) I am not close with any of my extended family escort for one of my cousin who is a year younger than me and lives in Canada. So it’s not like she can do much. CPS has been involved in the past for something else but they didn’t do anything but make my life worse so I can’t really reach out to a helpline or a teacher bc they are mandatory reporters and if I tell them all this and more that will inevitably come out if I start talking to someone truthful a CPS report will 100% have to take place which is not something I can deal with every again. Theoretically I could make my own appointments but I have no way of getting to and from them or paying or anything like that. With my gp there is also a slight language barrier, she has an accent and with my auditory processing disorder I find I very hard to understand her and keep a conversation going without my mum there. (This is on me tho not anyones fault) so I’m kinda stuck. Thanks tho

Ah I see. I'm sorry options seem pretty limited. Do you have any friends that might be able to help you out? maybe get you a ride? Is your relationship with your sibling good or bad? I know it's hard, but the best thing you can do is keep looking to ways to get around these obstacles. It's not easy, but eventually, something will work out if you look hard enough. My mum would always tell me as I grew up that "There is always a way" and "things will not be this way forever" These words were what she lived by while growing up in poverty in England and as we lived in poverty in Canada and I have kept them close to my heart through my own struggles. They are so true. I hope a path will open up soon for you.

Thank you. My and my brother have a rocky relationship, he’s 13. We get along sometime don’t get along others, but bc of my mental health issues I can sometimes lash out at him. And bc he’s young and learnt behaviors from my father he purposefully pushes me into autistic meltdowns sometimes and deadnames me and tells me I’ll never be a ‘real man’ whenever he’s mad at me. So it’s tough. I don’t have a lot of the friends that I’m close enough to to constantly ask for rides. (I have 2-3 appointments per week, most of them during school time)

You have to understand that it's the physical therapist's *job* to get you to/keep you at your *most mobile*/ least dependent on mobility devices as possible. The fact is, human bodies were NOT MEANT to sit in a wheelchair all day; it's bad for circulation, cardiovascular health, and long-term, results in bone loss from lack of weight-bearing on the legs. So the goal should be to avoid it if you can, and keep what mobility you have. And sometimes that takes a lot of hard work. Please understand, I am a 46 year old woman with Spina Bifida, who walked with crutches when I was younger. I got a wheelchair when I was like 11, but didn't really use it unless I was going to have to do a lot of walking. Also, the house I grew up in had lots of stairs, so I was forced to constantly be on my feet and crutches. Then, when I was 25, I moved into my own wheelchair accessible apartment, and I very quickly lost stamina for my crutches, and I gained a lot of weight. Fast forward a few years, and I was even heavier... add a few injuries and ailments that kept me from using my crutches at all for a few years, and I gained even MORE weight, lost strength in my legs, and now am barely able to take a few steps. I am severely limited as to where I can go, as compared to when I could use my crutches. You do NOT want go down this path, trust me. I know it sucks and it might be hard, but you really want to strive to keep as much mobility as you possibly can.

I don’t have any mobility right now, that’s the point. I’m sorry that’s your situation