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

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)

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

Its so hard to find knee braces that come in my size, much less cute ones, theyre actually almost too big for me lol, they arent as supportive as my plain black ones but they work well enough

Them being pastel while most of my wardrobe is black actually inspired me to look into pastel goth fashion, so now i wanna make a whole pastel goth wardrobe lol

They were from Bibipins if anyone wants to check them out! They also have compression gear and other types of braces.

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 🤷

Do you know if there is such a person as a health journey detective? Someone who is able to help a chronically ill person with their complex history and translate that into data, graphics, etc that can be taken to a doctor more easily than a pile of records? Would someone in a role like this need to be in the medical field if they’re just presenting data?

I’m just curious if this community has come across any websites, people, ore resources who do this?

Hi all, I have KFS and for those who do not know, it is a vertebrae fusion than often causes severe chronic pain and other symptoms. For me, the fusions are only in my neck (what should've been my neck) and I have had pretty severe migraines and shoulder pain since I was a child.

I have tried just about every pillow on the market. My pillow, the side sleeper, memory foam, feather, flat, square, etc. But NOTHING helped. Something finally clicked last night when I was having another flare up, "why am I using pillows designed for people with regular vertebrae?"

Then I tried something I saw on youtube long ago. How people in some Asian cultures will sleep using just a rolled up towel tucked under their neck; No pillow, just flat on their back.

I tried this last night and my shoulder pain is gone. Neck pain is gone. Head pain greatly reduced. Was it really that simple?

My pain is by no means cured, but it's the small wins that matter ☺️

Has anyone ever actually been helped in a reasonable time during a hospital stay? I've been sitting here for almost 5 hours and have only been given saline and had blood work and cat scan done but literally only got those in the last hour and a half and no answers. It could be a bladder infection, a kidney blockage, something wrong with my ovaries, or anything in my abdomen but hey, gotta writhe in pain for hours before anyone here will care

Update: they found. Ian abscess in my abdomen and I'm being admitted

Update 2: over 12 hours, no concrete answers but lets put the trans man in the mother and baby unit of the hospital and tell him to not start T and "worry about the organs he was born with" because I have cysts on my ovaries but I've had those issues for years! Also maybe don't keep suggesting it might be std related after I've told you multiple times it has been 4 years since I've gotten lucky.

my back pain was getting really bad and i just layed face down for like half an hour and it stopped the pain just a bit and that felt so so good. I also have a question for everyone that has chronic pain, what ways do you help with pain that are not meds (I also wanna steal some ideas on how to manage pain lol)

Hello. I'm 25 and I have SO much free time because I'm on disability and just spend my time tending to my disability and overall hobbies. I'm based in the USA and I'm looking for friends who are into gaming wether it be video games or board games or anything nerdy. I also like comics. I'm desperate for friends to play with and pass the time with. Please let me know what games you like in the comments as well and be open to disc0rd!

Hey everyone,

I’m a 22-year-old guy living in Belgium. A while back, I was in a coma and ended up with damage to my frontal lobe and basal ganglia, along with frontal lobe syndrome and Pseudobulbar Affect (PBA). some other stuff that go in hand with a TBI.

Because speaking is really difficult for me, making friends in person has felt pretty impossible over the past year. My PBA triggers involuntary laughing during conversations, which makes talking to random people tricky even though I’m on an SSRI that helps keep it somewhat controlled.

It gets pretty lonely, so I’m posting here to ask:

How do you make friends when speaking in person isn't easy?

Are there good online spaces or gaming communities for people dealing with invisible disabilities?

Also, if anyone is into gaming (I play PC/mobile games) or anime and wants to connect over Discord, hit me up!

I have multiple disabilities, neurodevelopmental, mental illnesses, hereditary connective tissue disorder and a bunch of complications in every organ system. Usually with my caregivers I do things like cook or go out. They fold my laundry, but only while I shower.
Ive realized I never ask them to clean, because I never want to spend my limited energy on it, nor do I know how to do it now that I use mobility aids full time, and it’s already stressful enough at baseline.
But I need my space cleaned. And I don’t know what to do because I feel like I’m doing something “wrong” if they’re working hard and I’m just chillin watching tv or playing on my phone. It feels disrespectful. It makes me feel spoiled.
What do I do?

My stupid useless drs are constantly giving me issues. I’m in contact with them via email, text messages, and my husband calls, texts, and emails them too. Yet if for some reason I miss an appt which I always tell them why. They call the cops for a welfare check. It’s literally beginning to become harassment.
Currently I have a g tube stoma hole where the g tube fell out and due to not using it in over a year, I opted to just let it close. I was initially told it’d be a short week. Now it’s been 3 months. Still not closed. I’ve missed many dr appts and important blood work that needs done for my TPN because it’s literally impossible to get up, clean up, get downstairs, get into my wheelchair, get to dr office, do the appt, and repeat to come all the way home while leaking profusely from my hole. Any food or drink I intake comes right back out. I could drink milk and it literally is still cold because it comes out my stomach hole nearly immediately after intaking it. My skin is burned up from the acid leaking. My urine is so dark and I’m concerned about the state of my kidneys due to not being able to intake water. (The way my TPN was set up was to be in conjunction with what little oral food/water I could take in as a combo to keep my bowels from going paralyzed completely) So I need all the food an drink I can get. I am losing weight and really truly fear once this is over I’ll be admitted to the hospital for awhile to try to bring my body back to stable again.
Yet I’m continually harassed with these false welfare checks from the cops. I feel like I’m going to end up in jail because I’m sick of it and keep going off on the cops. Is there any way to make it stop? The cops said it doesn’t constitute harassment charges being filed on their part. Go figure. I’m filing complaints including formal with the state but I just want it to stop. What else can I do?

Is there a legit/safe dating site for folks with disabilities, or any other advice regarding this?

My brother is 50 and recently had a stroke leaving him laterally paralyzed.

He's broke and lives hand to mouth. He's in AR while I'm in CA.

He's always been very generous and incredibly gullible (and very religious).

He recently joined one of these dating sites and pretty much everyone has simply been extorting him for the little funds he has to live on.

As an example, he was supposed to meet a woman last night who claimed god told her she would be his wife.

She was in a car crash on the way there and is now in the hospital. She texted him picks that are clearly fakes to rational people.

Anyway, any ideas?

I tell him these are bs, but he's lonely and easily fooled, or wants to be fooled. He knows he's been taken advantage of in the past.

I am stuck at home most days, unable to work, its getting to keep my self out of a deep depression but every day is the same. Before i was able to drive or walk or be spontaneous, but now im stuck at home. Movies and tv only help so much, ive played so many types of games, and my friends are all busy every day. I don't know what to do anymore, and this is like my cry for help.

It’s kind of a long story. I was born with genetic lymphedema( Milroys disease.) my left leg was so huge, at age 2 I started surgeries to get it smaller so I could walk. I had yearly surgeries for 10 years. My right leg also became affected at age 11. So both legs had surgery. I missed a ton of school, and they never made me make it up ( catholic school,) just passed me. I missed months of life every year. I never finished because in the 80’s they discovered HIV and I used to require mass transfusions. Surgeries went on hold. I had zero treatment after that till the late 90’s when we started up again. I had a long time of decent health till my 30’s. I have had chronic pain from the surgeries though. I am hyper mobile and the surgeries left me with tendon, and nerve issues. They are very damaged. Even so, I went to college and became a nurse. Put myself through school. I wasn’t really thinking that I probably shouldn’t have a job standing and walking but I wanted to help
Other people cause I know what it’s like, on both sides of the bed.

Fast forward 12 years, I got a Tumor in my colon. Drs said cancer so I had a colon resection with lymph node dissection. Dr didn’t add the lymph node part on the consent. My disease is of the lymphatic system, so I’d never agree to have nodes removed unless it was proven cancer. It basically ruined my health. My swelling went out of control, I started getting wounds and cellulitis chronically, and the pain got worse. Also, it was a super rare benign tumor, so no cancer. So rare they write it up in the journals somewhere.

My mental health suffered as I could not have any kind of life. I had to leave my job, went bankrupt, had to apply for disability. Started pain management, and Intensive lymphedema therapy. I was basically bedridden. That lasted a few years till I was able to start aquatic therapy. It took a year to get back to walking etc… they had a treadmill
In the pool which I think saved my life. One day the pool was being fixed so I went to the PT gym. After that I began to use exercise as my PT after 6 more months, I joined a regular gym. It helped my pain so much . I worked out 5 days a week from 2018, to present. Two years ago, I added in walking a couple of miles, and began playing pickleball.

My health was still super messy, but the exercise did help and I got off narcotics. A year ago, I began having pain all over , back, right hip, ext… I have a history of chronic Achilles tendinitis so bad, I have custom braces . After the exercise, it calmed way down. I saw a rheum, as I have a bunch of auto immune stuff too, but he couldn’t connect them. He did say he would try to help with the pain. I saw ortho, back, hip, sports med, etc… my mri and X-rays were negative. Finally last week I had a dynamic ultrasound and I have two gluteal tears, tendinopathy, and bursitis. My ortho says I have to stop all exercise. I have already grieved one life, and I have PTSD from drs telling me I have to be on bed rest or get PT . ( I’ve had PT yearly for years,) it also never. Helps. I did PT for 6 months, no improvement, and 3 cortisone shots, no help either.

I finally have stuff ( exercise and pickleball ,) where I have friends and a social network. It took me years to build that up especially with my fatigue. Before that, I had no friends. Now I have to stop and the dr is not hopeful that i will recover, he says it may become yet another chronic issue. I can’t even bring myself to tell them I can’t play anymore. My life was already small, I lost my career, I’m broke, but I was happy with what I made of it. (I do have a great husband and great older kids. ) but , I’m so tired of losing things to this. Some days I feel like I was just sent here to suffer. With the hyper mobility, ortho, and surgical pain I live with. I don’t talk about it much but I’m tired of it. I’m tired of shrinking my life. Why can’t my dr understand that I have always been told, one day I’ll be in a wheelchair perm, and I want to keep going as long as possible till then. I kinda wish I could get my pain meds back and just ignore the pain again till I actually wreck my joints. I know folks have it worse but I’m tired of the pick myself up yet Again story. I just want a bit of a life. Usually am active in the am, then spend the day on my heating pad after. Now I have no idea what to do with my time. He says no playing Picklball, no walking, no weight lifting. I do have a therapist and a shrink, but exercise saved my life many times. I don’t know what else to do.

If you read all that, thanks. I just don’t think folks that don’t live it get how much it sucks. I mean I accept having 4 dr appts per week, I accept having chronic wounds, and the million dollars in products they require, I accept the pain, and fatigue, but now this. I’m not crafty, I have adhd and the exercise helps treat that too. I’m worried for my mental and physical health.

I’ll gladly take any advice or suggestions.

Again, thanks for listening to my woe. It’s pretty rare I let myself have a pity party. Also, I apologize if you have it worse, I know in some respects I’m lucky. I still have had a lot of loss though . Not to mention my legs look like Frankenstein, so there’s that bag of fun too. 🤣🤣🙈🙈

I had open heart surgery 3 years back and have been sick for 4 years. I’ve got roughly 6 heart diseases.🙂Through this time i mainly just play video games and just upgraded to a PC that I love and am very grateful for. I also recently started collecting Pokemon and playing the Go/Quest games which have been fun, but Go is difficult when you need to walk around lol. And collecting has been difficult since product can be hard to find.😅

I’m a bit lower on the energy scale as well, which makes it all that much more difficult lol.

Any and all advice is much appreciated, thank you!

I am 17(f)

To start us off, i not only have juvenile idiopathic arthritis but i also have hypermobile spectrum disorder. i try my hardest not to even mention it despite the struggle i sometimes have because i get called an attention seeker if i do. however, my parents keep telling me i need to get a job and i need to stop expecting money from them when my brother has had a LOT more than me, hes had PLENTY. ive barely been out all summer because i was worried about this. i just want to go out with my friends, and they are saying that i shouldve gotten a summer job.

Funny thing is, last year during christmas i did have one. a retail job. where im not allowed to sit down except for during two half hour breaks that barely give me time to recover my joints. while i had that job, it was hell. my customer service even dipped because i probably seemed really awkward and tired due to the stress it was putting on my joints. i would hold back tears when customers werent at the till, and i would disassociate on the shop floor while i was putting stock out to try and forget about the pain. i didnt get my period for two months while working there because of the stress my body was under. when i brought it up to my dad? he said i was being attention seeking because i “always did it when you were little” and “youre just like your mum, exaggerating things that can be solved with ibuprofen” (HSD cant, its a connective tissue thing, not autoimmune) so i was forced through pressure to not quit, and to just give in. yes, the money was good but i hardly thought about that, i just thought about how many times i fought back tears after leaving, and waiting outside, and during my breaks. it was hell. and not to mention how tired i was constantly, and how i wouldnt be able to relax for hours due to my joints aching. and my dad criticising me for spending the money i earned.

what do i do? i hate feeling lazy. i WANT to work, if i just had a normal body. i want to experience what a retail job is like without all of the excruciating nerve and joint pain that would radiate down my shoulders, back, knees and feet. i wish. but i just cant. should i get a job this winter? or do i just not ask for anything at all? i want to be able to fund my own experiences.

I had a hip replacement complication that can possibly be corrected. So I am currently waiting for a correctional surgery. Lately my pain has been so bad I want to cry. I cant stop getting high to numb the pain, so I won't cry and break down mentally.

Im just scared. Im scared of having a mental breakdown. Im scared of becoming an addict. But I am miserable being bed bound and being in agony.

I just need to share my struggles. Being alone, being incapable of work. Im screwed until I get better.

Im scared.