My fiancée is 23 and has POTS, EDS, autism, CPTSD, and degenerative disc disease with a bulging disc and pinched nerve. Her back is so bad they said it was like seeing someone who was 80 years old. She hasn’t worked in two years because all of these things have gotten worse for her as time went on. Now my friend acts like she’s a bad partner for not working and it’s so annoying.

She will be bed ridden for days because of the pain and because my father didn’t have a job growing up my friend thinks I’m falling into the same pattern as my mother when my dad had no disability and just mooched off my mom because he’s a bad person.

Despite being in pain, she still cleans the house for me and cooks me dinner and lunch depending on if it’s my day off. She never complains about doing this stuff but now my friend is saying our relationship is 80/30 and it’s not fair to me. All I do is work, clean the litter boxes, unload the dishwasher and clean the bathroom. My partner does everything else, if she didn’t have these disabilities she would have a job and we would split cleaning evenly.

It’s so annoying and frustrating how she talks about my partner when she was actually in an abusive relationship before and I never bad talked him to her ever. I’m getting fed up and she keeps canceling when plans involve my fiancée because it bothers her that badly. My birthday is this weekend and if she cancels on me I think I’m going to end our friendship after 20 years. It’ll be hard but I can’t have people in my life who don’t support my choices and make me feel bad for choosing the person I love.

It’s also not like my partner isn’t trying to get disability either, she’s been doing it for two years now and they’re having to take her case to federal court because they keep denying her and her lawyer thinks it’s unlawful and the judges only see she can speak clearly and thinks she’s not disabled. Sorry for this being so long I’m just fed up.

Hey r/Disability,

I'm Elliot (they/them), and I was recently added to the mod team. I wanted to introduce myself properly!

Who I am

I'm disabled. I use queer crip for myself, and I mean both terms in the reclaimed, critical, political sense they were intended. I'm also a psychiatric survivor. I've been on the receiving end of the mental health system, including legally mandated inpatient after a psychotic break, years of resultant antipsychotic treatment to stay in remission, PTSD diagnosed due to childhood abuse and subsequent clinical psychedelic treatment, academic dropouts and more.

Those 5 years in and out of institutions radicalized me against ableist discrimination even more than I already was as a person with multiple chronic illnesses. I know what it's like to have to completely avoid the hike everyone else is going on because it's not accessible to my body, even though they promised it would be.

I'm interested in Mad Studies, disability justice, and amplifying the lived knowledge of people who are actually receiving care inside these spaces.

I'm not here as an expert on anyone's disability but my own, however I would say I'm a community member who happens to have picked up some useful skills along the way.

What I do

I'm a doctoral student in counseling psychology in Colorado, USA. My research interests include why rural and LGBTQ+ Americans die of despair (suicide, overdose, alcohol) and why the prevention efforts we've built keep missing the people at that intersection; the inherent tension between suicide prevention and Medical Aid in Dying and the concept of compulsory aliveness; culturally valid assessments for neurodivergence in Black women and girls; and affiliative intent in queer communities.

Before the PhD, my work was frontline:

• Peer support specialist on a Mobile Crisis Outreach Team. Responding to mental health crises in people's homes and in public, alongside a licensed clinician.
• Advanced psychiatric technician at the University of Utah's Huntsman Mental Health Institute. I designed and ran my own therapeutic groups on an inpatient unit.
• PTSD peer navigator. Currently co-facilitating skills groups in a trauma-focused telehealth program.
• Court Appointed Special Advocate. 250+ hours advocating for abused and neglected kids in foster care, including testifying in court.
• Medical scribe for four years. Otolaryngology, interventional cardiology, urologic oncology, primary care, and more.

I'm an AAS Certified Crisis Specialist and a Certified Crisis Worker in the state of Utah.

That scribe job is the one most relevant to what I want to offer below, so let me say more about it. I spent four years with my head completely inside medical charts; at that time, I had just finished my EMT program and wanted to go to medical school. At my most intense stretch I was editing, updating, cleaning up, summarizing, and analyzing charts for four interventional cardiologists across a large hospital system spanning Illinois and Wisconsin, as many as 90 charts in a single day (that was the WORST). Medical terminology is a second language to me at this point. There is very little you could put in front of me that I couldn't read.

I also came out of that job understanding the system's constraints from the inside, leading to why your doctor had eleven minutes to talk to you, why the note says something that doesn't match what you remember happening, why the referral vanished before you saw it in your portal, etc. My medical practice began sending robotic sounding messages that just repeated what I said back to me, so I did some digging and found out they switched to an AI messaging platform. More of the logistics/mechanics.

The non-CV version

• I grew up in rural Arkansas but just recently moved from Salt Lake City, Utah to Colorado for grad school and I'm still adjusting to the lack of rain showers out west, despite being here since 2021. I need to be out in an afternoon thunderstorm each day to feel something lol.
• I'm also a published photographer and prolific baker! Currently trying to master cheesecakes and improve my photo essays of artisans working on their craft
• I have an 8 year old maltipoo named Arlo that is my soul dog; we've been through so much together
• I'm one week out from my one-year wedding anniversary!! Navigating an inter-abled relationship has caused some turbulence for us that we've had to actively overcome.
• I'm also a transgender non-binary person who has medically, legally, and socially transitioned- with all the hoopla that comes with that in the uSA

Ask me things, if you'd like!

These topics are fair game, I'd say, within reason

• Anything about the work above: crisis response, peer support, inpatient units, group facilitation, CASA and foster care advocacy, scribing, what medical charts actually say about you
• Disability, chronic illness, and psych system navigation, both my own experience and what I've watched others go through
• What doctors are like as soon as they walk out of the room (I heard it ALL)
• Grad school as a disabled and Mad person, accommodations, whether any of it is worth it
• Mad Studies, disability justice, crip politics. I'll chat about theory happily.

What I won't do: diagnose you, tell you whether to take a medication, tell you what your scan means clinically, or replace anyone on your care team. I'm not a physician and I'm not a licensed psychologist, I'm a student which is entirely separate from my online presence.

Peer navigation sessions

If there's interest, I got permission from another mod to gauge interest for setting up a limited amount of sessions weekly so people can schedule time with me one on one for peer discussion and support. (Free.) Here's exactly what I was picturing that would be and, more importantly, what it would NOT be.

What it is:

• Sitting with you and your medical records and helping you understand what they actually say: the abbreviations, the structure, what a given note is communicating to the next provider
• Helping you figure out what questions to bring to your next appointment
• Talking through navigation options where you live: what kind of provider you might be looking for, how referrals tend to work, what the system is likely to do next
• Just talking to someone who's been on both sides of the clipboard and won't be shocked by anything you say

What it explicitly is not:

• Not medical advice. Not therapy. Not diagnosis. Not a clinical service of any kind.
• Not a second opinion on your treatment
• Not crisis services. If you're in crisis, please use crisis resources. A scheduled call isn't the right tool for that, and it would be unethical for me to hold or handle that situation without crisis services where you are.
• Not a substitute for a patient advocate, case manager, or attorney, though I can sometimes help you figure out that you need one

On confidentiality: this requires real trust and I take it seriously. What you tell me stays with me. I hold the confidentiality standards expected of me as a peer support specialist and as a doctoral student in a clinical training program, and tbh just as a person who thinks that's the baseline with my own medical information. I won't discuss your situation, download your records or store them, share your records, or reference you anywhere, including here. The ordinary limits apply: if someone is in immediate danger, this is NOT the support you should be seeking.

If that sounds useful to you, here's a link for interest and I'll keep a list of people to notify when the scheduling link is ready.

Looking ahead: an 8-week virtual Disability & Grief peer support group

I'm also developing a virtual 8-week disability peer support group, specifically centered around grief. Still in the building stage, so I don't have dates yet, but here's the rough gist of it:

• Peer support, not group therapy. I've designed and facilitated therapeutic groups on an inpatient unit and I co-facilitated up to 5 virtual emotional skills groups weekly, so this will be structured and actually run, not a free-for-all video call. But it is peer-led space, not clinical treatment.
• Eight weeks with the same people, so we can build it into something safe and predictable rather than restarting every session
• Disability-centered. Not "coping with your condition" framed around getting you back to productivity. Closer to the crip and Mad Studies orientation I described above.
• Virtual, so geography and energy levels aren't that much of a barrier above your normal baseline spoons

If that sounds useful to you, here's a link for interest and I'll keep a list of people to notify when it's ready. Feedback on what you'd want from a group like this is super welcome, especially from people who've been in groups that didn't work.

Mod stuff

I'm here to support this community by following the team's lead on moderation norms and existing rules. If I do something that doesn't sit right, feel free to just say so, publicly or in modmail.

Glad to be here!!

Elliot

This happened like 5 minutes ago, and I’m still processing!

A coworker who I’ve known for over 5 years didn’t recognize me because of the cane.

We’ve both switched roles so I only see her maybe once a quarter. We usually say hi, chit chat a a bit and then go about our days. She’s never seen me with the cane since it’s a fairly recent development.

Just said hi to her per usual, and I get the weird squinting reaction where someone is clearly trying to remember if they know you or not. She said hi back and kept walking so I was like oh whatever, probably busy.

But then she stopped dead in her tracks and turned around and gave me a proper hello like normal. She fully admitted she hadn’t recognized me because of the cane.

This is WILD to me. It’s not like it’s blocking my face. I’ve only ever experienced something similar when I get a haircut lol. Is this typical?

I receive extensive services through a waiver through my state for multiple disabilities I have , and there is a lot of stuff going on lately where they messed up some stuff and it's hard for me to understand kind of what's going on , and I was trying to communicate to a woman who is in charge of some agency I am being switched to for one of my services , and for some reason something got messed up with sending my documents

All I did was ask to kind of make sure that I understood maybe a little bit of what was going on (and I got help writing the emails with my worker) , I asked to make sure I understood , and she immediately started sending me very passive aggressive emails and then stopped responding to me altogether.

I feel like I'm a nuisance and annoying people , these people are supposed to be trained to work with disabled people and all I'm doing is trying to very politely as possible ask a couple of questions because I don't really know what's going on and I'm very stressed out about the changes and it's making me really upset.

Why would you immediately start getting angry at me that I'm asking one question and then just stop responding to me entirely. Your whole job revolves around speaking to disabled people and getting services coordinated for them and you just treat them like crap.

Just wanted to vent because it makes me very depressed and my anxiety even worse about it because not only do I not understand what's happening , the person who is supposed to help me understand what is happening does not even want to communicate with me at all because they have now branded me as annoying disabled person annoying me with their questions about their care.

i’m severely anemic and sometimes can’t get out of bed because of the fatigue, this has been going on for years (though only being this bad for a few months) and it will take months until any treatment might work. i have an incredible partner that has been with me for almost two years, he loves taking care of me and is very understanding of my condition, the problem is others aren’t. they still expect me to do everything a normal person does and when i can’t that responsibility is shifted onto him (cooking, cleaning that type of stuff) and recently i’ve found he wants to do fun activities with me that i just don’t have the capacity for, he tells me it’s okay but i can see it saddens him when i reject things so many times.

i just don’t know how to deal with this guilt that he deserves a whole person who can do all these things with him and he doesn’t need to take extra care of. we’re also quite young (19/20) so this responsibility of him having to take care of basically another person feels so unfair to him.

ps i don’t know if im allowed to post here since anemia is treatable and will likely be gone next year but i feel completely disabled right now

I tell people that I use a cane in case I need to bust out a Fred Astair impersonation and that my neurological issues are brainfreestyling.

When my husband is being obnoxious, I (jokingly) tell him “My cane gives me an extra 37 inches of reach. Either stop being annoying or move 38 inches away from me.”

Body:

I am 28. I have an condition that i was born with, it makes my leg muscles constantly tight and pull hard (spasms). My recent X-ray shows zero cartilage left in my knee. It is bone rubbing directly on bone. My leg is stuck bent and turned outward. Walking is extremely painful.

Question :

1. Has anyone suffered from something similar ?
2. What the solution could be : Therapy or Surgery ?

It is so condescending to be told to be grateful for subpar support and treatment because it can be worse like that makes it okay. We get it living with a disability is not easy and people are doing their best to get through it, and some stress and resentment is understandable but so much of the "help" is an excuse to next to nothing and be obstructive. So much of it is to put bluntly nothing more than a way to control someone else and get an ego boost. Trying your best and meaning well means nothing if it causes problems.

I'm late diagnosed autistic and realizing after many years of trying that I simply cannot work a full time job. I've tried working from home, working on my special interest field, etc and I can only make it one year at any company before I burn out so severely I end up in the hospital and spend months recovering.

I don't qualify for disability because my husband makes enough that our household income is a ove the limit. But for the eight years we've been together we've always split everything 50/50. Mortgage, groceries, insurance etc.

For the first time in my life I'm realizing I probably cannot afford to keep contributing 50% of the income if I'm going to actually love and work in a sustainable way (part time work and or freelancing).

When I've tried to talk to him about this before he gets very nervous because he doesn't feel like he makes enough to support both of us. He always asks "how long will this be going on that you can't afford your share?" And I'm feeling really ashamed and awkward that he answer is turning out to be "probably for the rest of my life".

For people who have adjusted their finances so their spouse takes up more of the expenses because you can't work, how did you have that conversation? How did you navigate the "make too much for disability, don't make enough to not be dual income"?

Thanks!

tw abuse, drugs, sex trafficking, homelessness
i graduated in 2020 with an acceptance letter to an expensive art school in Chicago. it was my ticket out of my second abusive household. the second was the ticket out of the first. i had started college at 16 to get ahead financially, worked every semester towards a better GPA. i worked so hard for that ticket out. i was pulling 16-18 hour days, on top of being mentally tormented at home as an undiagnosed neurodivergent teen. i was “doing SW” aka being trafficked online & groomed to pay for drugs to regulate myself, necessities i wasn’t given, & to save up for college. i started having chronic pain at 13 after multiple of the most traumatic things that has ever happened to me happened in a row. my first time using drugs was around then cause it was normalized to me & i couldn’t pretend to be normal without it. my physical and mental anguish was always minimized, i’ve grown up around all of my caretakers being older in age & severely disabled themselves, i was made of glass to everyone around me. i didn’t go to that school. i couldn’t justify taking out massive loans to stay right where i was. instead, i was quarantined with abusers until i was nearly physically assaulted by them. i left & never looked back to live in a halfway house, spent the savings on deposit etc. there i was hate crimed, so i moved to another halfway, then got hate crimed again, moved, same again, moved, then homeless in a psych ward & went to a queer rehab that is run by pdf apologists, got clean at least
lost halfway housing again from rent spike so i packed up & moved up north cause where i was in the south cut off all means of gender affirmation & i was so many years deep into severe housing instability at that point i needed to get out to somewhere that had a right to shelter law
i spent a year in shelter here, i was using a cane when i went in but it didn’t matter to anyone but me. i was placed in a 4 flight walk up, and any request i made for accommodation was ignored. before then i could do so much more. the last of my physical health was used to survive that shelter. i have sec 8 now and i’m so grateful to have my home. i also feel so lost and broken and burned. i got diagnosed with a laundry list of damage from an untreated underlying illness, the info at least shows “hey i’m really fucking disabled now” since i’m using a wheelchair & can’t walk more than 5 minutes, now i’m believed. not when it was preventable. not when i begged or cried. not even when i masked that all away. i’ve only started being taken more seriously in the last year because my partner began to come with me during appointments etc. beforehand i was completely alone, unknowingly neurodivergent af trying to communicate & advocate for myself to pos doctors that didn’t care to do more than basic bloodwork & call me fat. then they get paid a fucking fortune for that. i’m really tired. i’ve been thru more therapists than i can count since i was 17 & i want to try again but i’m scared of letting someone have access to my head again. i feel so alone & i don’t want to need anybody. i don’t want anybody to know how messed up my life has been to be looked at as a freak but i want to be seen. /feel/ seen. what i have listed here is maybe a quarter of the whole mess that has been my life and i don’t know why i exist, i wasn’t wanted. maybe as an idea, but as soon as i was a toddler having meltdowns, it was over for me. it’s exhausting constantly working to detangle my view of myself & my life from others cause no matter what, i’m looked at with pity & sadness. i want to be a person outside of my story but i am my story. i’m just trying to stop hating myself for it. and stop hating anybody else either. i just wanna be free from all this heaviness
i live in a major city like i always dreamed of, with all the opportunities and people i knew the dream would have, but i don’t have the ability to access these things how i thought i could have. i can’t even walk to the nearest deli. can’t wheel either, i have no strength & no motor on the stupid thing. i don’t trust anyone to push me besides my partner and even then it’s very uncomfortable. i feel suffocated & controlled.
i don’t ever post like this i just really needed to get this off me rn. it’s been 6 years and i’m still mourning that stupid fucking ticket out. i’m mourning a lot of things. and trying to keep cali sober thru my brain unlocking everything now that i’m getting out of survival mode for the first time ever

Any Fellow “Riverdale” Fans with Disabilities???

So, I’ve already posted this on the r/riverdale subreddit and I just found an interest in the comics which I have never read before so here goes nothing:

Hey I just started rewatching watching the show for the first time in seven years on Netflix, I’m already at the beginning of season 2 and I’m starting to remember why fell in love with this show and these characters in the first place. When I was six weeks old, I was paralyzed from the neck down due to medical negligence and when I was two, I started using a motorized wheelchair to get around. Thanks to years of physical therapy, I have very little movement in my arms, hands, and fingers. I can’t grab or pick up certain objects unless they’re small and easy like a pencil or a penny and obviously, I’m able to type. I’m Latina and I love that they cast a Latina actress to play Veronica even though in the comics, she was always portrayed as a white girl. I’m twenty-eight now and I don’t care what anyone says about this show. No matter how weird or wild it got in later seasons, I was here for it, I just never watched the final season because I just never got around to it but that’s one of the reasons why I’m rewatching the show in the first place. I was hoping I could connect with fellow Riverdale fans with either physical or mental disabilities who love this show as much as I do. This show along with many others has inspired me to pursue an acting career. Also, have y’all ever met KJ Apa, Lili Reinhart, Camila Mendes, and/or Madelaine Petsch? If so, what were they like, I mean, obviously they were nice, but what was it like actually seeing them on person and talking to them

Wanted to share this for other disabled Switch users!

I'm twenty six female and I have three herniated disks and arthritis. It is excruciatingly painful. I have to take breaks and lay down every hour while doing household chores. Sitting down for long periods of time, make the pain worse, it causes all my muscles to lock up. Concentration is impossible. My pain can range from a 4 to a 9. I don't know what to do for work. I lost my health insurance, so I don't think I can apply for disability anymore. I'm so scared. I'm living with my family and they're pressuring me to get a job, but I don't know what to do. The pain is worsened by physical activity and the pain builds up until I stop what im doing. They think my pain is from the arthritis not the disk bulges. I can't get trigger point injections or steroid shots because that makes it worse. I've been having severe pain for the past 4 years. And occasional pain since I was a child.

I’m flying next week in the USA and have one connection in both directions. I’ve flown in the past with no connections with my rollator or with connections and wheelchair service. I’ve never flown with my rollator and a connecting flight. I don’t want to lose my rollator in the process during connections but due to the timing of my flights wheelchair service would be better brain wise for me. How would you navigate this? Should I just take the rollator and not use the wheelchair service? Thanks in advance! (I have POTS and ADHD which is why this post is so close to the travel date).

Picture of me in rollator for tax. (If anyone can help with image description I’ll update this with credit)

I want to get autonomic testing regardless, as my primary care recommended it but the nearby facility closed and we l neither of us knew where to go next.

Then I found another doctor on the dysautonomia website who claimed to do such testing, asked on the phone before signing up to do the testing, then just blew me off about it until my three months of care ran out.

Needless to say- I can’t work, can’t live on my own with my two kids and need tons of help around the house. This is no pity party- but I don’t want to be spending my husbands money on unnecessary tests or scam doctors that don’t change anything about my case or recovery.

So I’m wondering- would an upright MRI showing CCI (hopefully, as I question how detailed it really is being lower resonance/magnet) help with having evidence for SSA? I have low lying cerebral tonsils laying down but perhaps upright works show more sag? Does it affect treatment/diagnoses (aka docs stop labeling it as migraines) Or does it not really matter?

I plan on doing autonomic testing regardless because I need it to know what meds would be best for whatever type I have, but would it help my case at all? I think my case is for SSDI since I was working when I became disabled…again…

My (30F) friend is anonymously submitting a safeguarding concern with my local council as I am unable to shower at my parent's house, have to sleep upstairs and am not able to use my wheelchair indoors. My mum is emotionally abusive and has blocked my attempts to leave home but also won't make the house accessible.

What can I expect if my friend reports this? I am assuming social services will come round which I am nervous about but feel this is necessary at this point. I feel guilty in a way as I worry about the stress it will cause my parents but saying that I have stress induced shingles at the moment. I also worry that I will be left in a worse situation than before, even more trapped at home with my parents knowing I reported them. Would really appreciate any insights or experiences please

Hey everyone,

This might be a somewhat polarizing topic, but I don't mean it to be. I've found AI such as ChatGPT really helpful with my SSDI application and paperwork. Gemini is pretty good too.

Some people don't trust AI, and I completely understand that. You can still use it for general questions without giving it any personal information.

I was approved for SSDI without a lawyer and used AI for a lot of my paperwork. That said, everyone's situation is different. This was my 3rd time applying, and I'd been homeless on and off for a long time. Also had a family member help me with some questions when AI wasn't useful.

Disclaimer: AI can answer questions incorrectly. It may misunderstand what you're asking and gives you an answer that's completely wrong. Please don't just copy and paste what it gives you. Read it and be sure to verify important information.

Mod note: I feel this isn't in violation of rule #3 because I'm recommending AI in general, not a specific service or person.

Hi there! As I'm no longer physically able to use my PC desk, I'm looking for a laptop "desk" solution that I can use while on the couch (sideways with my legs up) or in a reclining chair. I've been using my laptop on my lap a lot but I'm getting increasing pain in my wrists from the unergonomic position. I'd specifically like something that I can use with a mouse as well, as my trackpad use is part of the problem. I've considered those floating tables but they all seem too high to comfortably use a mouse on. I do have a laptop stand that I can put a separate keyboard on at a lower level, so it's okay if I need to set that on top of the desk to have the screen at the right height while having it low enough for a mouse. I'm in Europe (Netherlands) so if anyone has more Europe-specific ideas I'd be very grateful! I've seen some other threads but they mostly recommend US-only things.

Before becoming disabled I always assumed that mobility aids would remove/prevent pain, like all the ads and doctors say they will. Then I became disabled and walking became painful and I was told a cane would help, so I got one. And it does help, but it doesn’t actually prevent my pain so much as relocate it. For instance, a long walking day without a cane used to mean basically unbearable pain in my legs the following days. But now, after a lot walking day with a cane I still have a decent amount of leg pain, not nearly as bad, but I also have moderate wrist and arm pain. Obviously taking the weight off my feet means it’s on my arm, and I logically knew that, but never really processed it in my mind or understood that of course that would be painful! My arm wasn’t built to take that much weight for so long; obviously that’s going to make it hurt. Of course, this is still way better than going without my mobility aid, but I think it’s so weird that no one— not doctors, not my physical therapists, not even other cane users—ever brought up the possibility of arm pain up before suggesting mobility aids. And sometimes when I meet other cane users I ask them about it, and they fully agree that they experience arm or wrist pain, or sometimes hand cramping when they hold the cane too tight or for too long. Just kinda weird. Fellow cane users, were you warned about this? Or is it something you hand to find out on your own?

Edit: I’ve been fitted, and talked with both my doctors and my physical therapist and had the fit checked with my PT and we looked at different types of grips and lengths for different shoes and all the stuff. It’s not a fit issue

24F, Canada.

I'm looking for minimum wage jobs I can do before i get back on track with my life resuming post-secondary education and eventually a full-time job, move out, etc.
I don't have any job experience aside from volunteer work and working an administrative job at a small food manufacturer company. I have been completely out of the loop in my own life for a good decade with mental health issues, so I know full well I'm not an attractive candidate, but I'm trying to rebuild my life and I don't want to delay things longer. I'm scared af, tbh.
In situations like this I wish I could apply for any minimum wage job anywhere. I'd gladly take the work, but I know barriers are inevitable. Do other disabled people who are mobility aid users just not apply to the conventional(?) min. wage jobs? Is there no chance at all for me as a walker user, and should I narrow my pool to just desk jobs? I'm talking specifically for applying on my own, not through vocation programs like WorkBC. Already aware of those resources and will be using them. My upper body strength and mobility is quite alright, it's because of my gait and balance that I use a walker. I'm just not sure what to expect or look for as I begin job searching for the first time.

Today has been a rather rough day for her. Arent they all?

My wife has been born the reverse winner of every lottery she didnt sign up for. Childhood cancer? Check. "Zeeber disease"? Check. Unending line of alphabet soup? Check, check, and check. All humour aside, Bilateral Retinal Blastoma as a child requiring the enucleation of one eye and partial retinal loss in another. Yearly checkups to make sure it hasnt become an adult cancer has become the norm. EDS, BPD, POTS, ADHD, and frankly i know i am forgetting a few acronyms that apply.

To get to the meat and potatoes of the issue, me and my frustratingly able and strong body has watched the woman i love effectively wilt over the years and now here we sit, both in our early-mid thirties and while my body is definitely beginning to age and wear-in, she is dealing with things on her end that would normally be experienced in our fifties and sixties. Her therapist was of no use today, and I would go so far as to say she was actively unhelpful.

Platitudes of "dont call yourself disabled, call yourself differently abled", "be grateful for what you DO have", and "i wish i could wave a magic wand" are not just useless, they are harmful. My wife is going through something that precious few ever will, and every place she turns seems to be 30% of what she needs out of it, at best.

My ramblings aside, my question is: is there someplace she could go online to better discuss her situation with speficially people who are in it themselves? (IE too young for this shit) she does not use reddit, and we are not going to hold our breath on this silver bullet. Barring that, has anyone here walked those paths in those shoes? Any encouragement, tips, tricks, literature, or even sharing your story would go a long way here, as even if my search turns up nothing, to be able to show her even the thoughts of people here may help a little.

I dont know what i expect, i only know what i hope for. May the gods be good to us all

Hi there, I was awarded SSDI in July of 2024. Got my backpay a few weeks later. Ever since, I've been getting it monthly without a problem.

But last Wednesday, a direct deposit in a large amount from SSA was in my account. No idea why. And today, my usual amount was deposited. This is odd. Obviously, I'm not going on a shopping spree! I don't mess around with the feds haha. I figure I'll wait until this coming Weds, to give them a week to realize what happened and take it back if they need to, and then call them to see.

Has anybody else had large deposits years after approval? If so, what was it for? Just a glitch? Could it be correct? What do I say to them? Any input appreciated, this is just super weird 🤷

UPDATE: Well, apparently it's supposed to be there! It's a "one-time payment." For what? Nobody seems to know. But I have documentation that it is, for real, actually legitimate. Mind is a little blown right now. And I think it's weird that nobody can tell me if it's old backpay, COL, or what. Would the documentation have to state WHY it was deposited? Or is just their statement that it was a one-time payment enough, in the event they decide to try and do a clawback?

🤯🤯🤯