Hey all. I am 23 and just had surgery for tethered cord syndrome. It causes spasticity in my legs and severe nerve pain in my back and legs. I used a wheelchair nearly full time in my house before surgery and now use a walker and cane mostly and wheelchair for leaving the house or flares. I also have heds and many other conditions but tethered cord and scoliosis impact me the most.

The rise in ableism online has been weighing on me a lot. The passing of Rj Mitte. :( The Texas versus Kennedy ruling. The rise in ableism online in every disabled persons comment section. Articles being written about people with mobility aids that are decorated are all faking. They are so worried about accusing people of faking that they are hurting REAL disabled people. I’m not really self conscious about my mobility aids because I’ve needed them consistently and gotten used to the looks since my tethered cord got worse. But it still makes me sad seeing people bash anybody with a mobility aid. Deciding who they deem a faker.

While there is a lot of misinformation spread about heds online it makes me upset seeing comments from doctors saying anybody with eds is faking. I’ve mainly seen this rise in ableism online on tiktok and some insta communities. Also on Reddit on other threads. Some people may self diagnose conditions and not have it. But a lot of us do
Have these conditions. I was diagnosed with heds at a young age and had symtomps at a young age. Many people discover conditions later in life also. Or are impacted more later in life. hating on a whole group of people or conditions you don’t know anything about isn’t helping anyone. Especially disabled people. And conditions vary in severity how hard of a concept is that! Some people with the same condition may never use a mobility aid, some use a cane, some use crutches, some use wheelchairs full time, some have spinal cord injuries, some have chiari which can require brain surgery, the variety is sooooo wide with eds, and the same honestly goes for so many conditions. Think of the variety with in conditions like cerebral palsy or spinal cord injuries. There is a huge variety of how individuals are impacted.

I’ve read a lot about disability history and understand how deep ableism runs. I’ve read a lot of books written by disabled people and activist. It just sucks living in a world that actively chooses to misunderstand our experiences. Just sharing to vent a bit to people who might relate. Thanks for reading 🫶 sending love to anyone also feeling the weight of the world for disabled people.

TW: deep depression and suicidal ideation
Not really in need of advice I don’t think, just support. I’m really struggling

is anyone else just exhausted? not just tired or fatigued, I mean bone-deep exhaustion and boredom that makes staring down the barrel of the next 50 years of your life seem unbearable? I’m only 30 something and already struggling so much. Im dreading my upcoming birthday because it’s another marker that time has moved on while I’ve been stuck in the same place with no real milestone markers like my peers. It’s such a helpless feeling. I feel like I aged 40 years in only 8 years since receiving my diagnosis and my peers and I are in totally different places now. They’ve moved on without me while I’m still patiently waiting for my turn to get to experience happiness. 🥲 and it isn’t for lack of trying. The last 10-15 years I’ve watched a revolving door of friends finding partners and getting their happily ever after when I struggle to get past a first date still. I’ve seen friends travel the world. I’ve seen amazing career promotions and opportunities. I’ve seen them start families….and I’m not getting any younger. 😭 those are things I wanted for myself too. And I’ve had to already shrink my dreams to be more realistic, it feels like I’ve dwindled them to the bare basics of what I hope for and apparently even that’s asking too much.

I feel SO TIRED of living this way. I don’t have a life. I don’t have a partner. I don’t have fun trying to date with this disability. I don’t have a social life anymore. Ive become completely isolated from the few friends ive maintained through the years. I don’t have any meaningful connection and it isn’t for lack of trying! Im so lonely and i ache for this deep connection with other people I cant seem to find. I also struggled significantly as a kid in a social sense as I’m neurodivergent and so ive always felt on the outskirts with friend groups. I’ve only ever had a handful of pockets of belonging over the years. I’m always trying to find my people and have it LAST, and it never does. The disability honestly made my life even more isolated so meeting people has become even harder. I also have to mask my symptoms so much more now, I feel like I can’t ever just be myself around people and I’m always waiting for people to cut me off when they realize what I a burden I am.

I just feel like every time i make even a little progress in life, my illness and disability knock me back a few steps again. So I end up just stuck and free floating through life, just enduring and surviving. I have all these goals and dreams and aspirations and yet, a body that cannot keep up. I’ve felt stuck in the same place for the last 5 years since leaving work and going on disability, and I’ve been in a deep depression for the last 3 since having to move home with my parents. I just often don’t see the point of going on, Im not living a life, I’m serving a life sentence. nothing is bringing me joy, the world is wicked and evil, most people have zero clue the struggle it takes to just exist every day for someone like me, and I’m just at my wits end. I really have considered euthanizing myself. I’ve begged and cried to doctors for years to try and help me manage both my physical symptoms and mental illness ones with no luck. I’m just expected to SUFFER! But since I don’t plan to act on harming myself, the ER and doing a week inpatient tends to not really be an option. I’m trying so hard to feel better but I just feel trapped and miserable in this life. It has turned out so much smaller and quieter and different than I thought it was going to be. Especially given, I had such a hard time as a kid, and adults always try to make you feel better by saying you’ll have your time to be on top one day. I don’t feel that’s been true for me and it’s devastating because it’s how I coped for years with hardship, just knowing if I survived and endured, something better was promised down the road. I don’t feel that way anymore which feels very hopeless. Instead, it feels like I’m being punished for some past life mistake. 😞 im so depressed. I’m just trying so hard to keep going for SO LITTLE reward and I’m losing more and more of my spark every day.

I do therapy, I see a psychiatrist, I see a pcp. Like I’m trying so hard to get better but it’s just getting worse and I feel like no one is taking my suicidal thoughts seriously and they’ve escalated. I’m starting to latch onto certain dates and am thinking about what if I ended things before my birthday next month (which I’m dreading.) 🥲

The concept of "accessibility" Is very relative

I’m a year and half into the SSDI process and ironically one of the reasons I am applying is that I am severely mentally ill and am hospitalized very often. My caseworker and I got the news yesterday that our appeal was denied. She is requesting more information because we have no idea what else SSA could possibly want from me. There’s 5000+ pages of proof repeatedly of severe psychiatric and physical illness.

How do you not just give up? Especially for those who lost everything, what kept you going? When I got the news I started googling the nearest bridge and the only reason I didn’t was my cat. I am about to lose everything officially tho potentially including my cat who has been my lifeline.

I’ve been couch surfing and staying with friends but my luck has run out as all my friends have or are moving away from the area where the hospital I go to is and my access rides are serviced for. My caseworker told me straight up there’s nothing for a young person who’s applying for SSDI without family support I just totally fall between the cracks. I’m not trying to be dramatic when I say I don’t know how to go on like this. I am so tired.

Hi all, my care team and I are starting to look into getting an electric wheelchair for me to use for outings, the biggest issue i need to be aware of is the weight of the chair. I see a lot of good things about OAS and Paiseec chairs, but because of my insurance being brand new and full of hoops I need to jump through, im most likely paying out of pocket. I know its probably unrealistic but I'd like to keep the chairs under $800 maximum but I can always figure something else out. Any insight is appreciated

First of all, be warned this is a long one! I have poor motor coordination and can’t feel where my body is in space because of a condition called dyspraxia. It’s invisible and it also affects the way I process information from my other senses.

About a month ago, I went into town to meet up with some friends and then after that, to meet with another friend somewhere else. It was fairly busy in the street and busy streets feel like being pelted by fast moving human traffic from all directions.On more narrow streets I’m not sure where to move. When someone comes toward me I just stand to one side and let them pass. If there are a lot of people, I stay out of their way until I see a big gap and feel safe to start walking down the street again.

I said goodbye to the last friend and went to buy a few things in the supermarket. I get particularly nervous in supermarkets because I worry about bumping into people or not realising I’m standing in their way. I usually get a supermarket delivery but it’s not always possible to buy everything that way.  

Anyway, it wasn’t all that busy in there. Music was playing and the lights were bright and flickering. Those things don’t normally bother me to be honest, but I was tired and felt slightly nauseous. The colour, sounds and flickering grew more intense and I began to feel even more sick.

I kept shopping and playing my usual game; dodging out of aisles whenever someone else entered them and not walking past people with trolleys. It’s basically a case of constant social distancing because standing far away from people is the only way to be fairly sure I’m not too close to them. Everything was starting to get brighter and louder and echoing more. It was as though nothing was quite real and I was fighting my way out of a dream. I felt lost in space and everything was spinning.  I started walking and not knowing what was going on.

I just caught sight of a worker carrying a large, heavy stack of crates and tried to move out of the way but I’d already got really close.  I suddenly noticed my basket would be in her path but couldn’t move it out of the way quickly enough. I couldn’t feel whether I’d bumped into her.

A few seconds later I heard her say something behind me loudly in an angry tone. Or at least I think it was her, it was hard to tell at that point.

I was panicked and still in the same bizarre, dreamlike haze.  I’ve now been taking short breaks when I go out to stop me getting to that point. I had to get out of the shop. I feel like I should have apologised but at the time I couldn’t think or speak and afterwards felt too ashamed and scared to walk back and speak to her. She could have been hurt and if she wasn’t, it was a close shave. Another time she could have been knocked off of her feet.

I’ve traveled freely my whole life but now I’m actually rethinking whether I should be in busy public places like supermarkets at all but there are quieter hours with no music and lower lights, designed to be more accessible for people who find those things hard. Disabled people fought for the right to be in the same places and use the same services as everyone else. I don’t want to encourage the erosion of those rights. I want future generations to feel welcome in public places too.

I just don’t want to hurt someone or put them in danger. I also don’t want to make someone feel disrespected when they’ve already been treated like dirt by customers all day. I really don’t know what to do.

In order to not mess up my disability application I can only work 20 hours a week and my income is capped at $1600 gross per month. (Not that I would be able to work more than that anyway with my disability.) I can't work a steady job with steady hours. So gig work it is. There are lots of options out there but has anyone had success with specific gigs? Are any of them worth the time or effort?

I specifically don't want to do uber eats because my experience with those is that you end up making less than $10/hour. My car isn't eligible for ride share either.

Options I'm looking at:

Rover.com

Care.com

Task Rabbit

Upwork

Amazon Flex

Spark Delivery

Flier Distribution Services

Papa.com

Panhandling?!? (Semi serious)

I'm also really worried about being able to handle multiple gig income streams and multiple jobs per day because of the mental load of organizing all of the different schedules and apps. I can barely handle showering and eating on a regular schedule but somehow I have to make all of this work???

I'm just feeling very overwhelmed and discouraged because my partner and I recently separated leaving me with all the bills and I'm still at least 3 months out from ssdi. I feel like such a worthless person not being able to make money and i don't know what I'll do if I'm not able to pay bills.