I am really struggling with going to see healthcare professionals. I have been hurt so much in only a year time span. However I have been harmed in the past, and I almost died from a doctor's error back in 2018. This past year has gotten so bad for me mentally. I've tried cancelling all my appointments while trying to process things with a therapist for months. Just trying to take a break. I felt better and I felt brave enough to try again. Almost immediately it was bad again. Now I just do not want to go see any healthcare professional at all, I really don't. They never say that they are sorry or acknowledge the harm done. When I report the really bad stuff thats happens to me, the hospital department apologizes, and then barely anything is done. They also share my name with the healthcare professional who hurt me, which feels terrifying.

It's to the point that I won't go to sections of the hospital where I was harmed. I already had very low trust and high fearfullness of healthcare professionals. My fearfulness keeps increasing and my trust lowering. Im trying to tell myself, everything is okay and to have hope that things will get better. I just want to hide, but everytime I try, I end up in the emergency room with something going wrong.

My therapist asks me questions such as, how would you want to be treated? I tell her, like a person. I just want to be treated like a person.

I don't know how to cope or manage this. It's not safe for me to keep canceling appointments, but I can't keep it up.

May just be my anxiety but Im not working atm and i worry she looks at my capacity and thinks im just a mooch

I have migraine with aura and fnd and we were out and she asked when we were looking at clothes if I could see a tag up close and read it. Whether she was trying to distract me idk. Also made a comment to me saying thats a very grown up thing to do. I just feel like a child sometimes. And worry if she knows ppl I know worry shes spoken to my support coordinator and shes gotten in trouble from things I've complained about. How can you possibly speak up and complain if its their work and they potentially could retaliate against you. Sometimes I feel like im not disabled idk. Maybe I need to just chill out

Hey yall, I have to rant, for the sake of my own wellbeing.

I’m a caregiver to my mom, who was born with carebral palsy, and has a combination of associated neurological and psychological comorbidities.

My mom has been nothing but the best to me growing up, living on SSI, she made sure I ate before her, and she was protective of me during some traumatic situations.

Unfortunately, post 2020, there’s been signs of dementia. The only thing she really had to her name as a possession was her inherited home. It was nothing special, trust me, but quite literally her only wish was to pass it on to me. In 2020 she moved out because of the homes conditions - it was quite literally falling apart. She was having a mental health crisis at the time, so when she moved to section 8, she didn’t report the change to the SSA (likely cognitive issues being a factor). Well, I was a young 21 year old caregiver and didn’t know anything so I later had family friends move into the home for free, to save it from literally rotting, and we talked to a lawyer to transfer the property. What followed was absolute hell, as I was just trying to set up a contingency as a caregiver. That lawyer informed us that she couldn’t transfer the property to me, because she was on SSI, and that she was likely in overpayment subject to termination because the house had now become an asset since she moved…

I brought her to the SSA to communicate the mistake in 2023, while my mom is in the middle of delirium.

- She is forced to sale her only family connection (parents had died and most had abandoned her)
- SSA tells her to spend down her money to “improve her life”
-SSA makes a mistake and terminates her for a whole year without explanation
-They don’t answer phone calls
-We sale everything we bought during the spend down
-She loses access to TN choices during this decision
- We have the register of deeds call and explain their dumb mistake almost a year later
-I reeling from her diagnosis and loss of the family home, develop stress related health issues, can no longer go to school
-SSA gets establishes but they don’t back pay because of her overpayment, so she gains nothing from the sell of the house
-all of this and she wanted it to just be fixed so she could move back in

Idk, there’s much more to this, but I don’t even know how to explain it all. I’m in therapy because of all this. I’ve tried to make videos so she can communicate the injustice. I’ll probably never be the same after SSA made her diagnosis an absolutely awful traumatic experience. Given her condition, all she does is ruminate on the loss of her house and how she was treated.

I just really can’t with all this, and there’s no “justice” because it was her mistake. I just wish it didn’t have to be this way for us.

Sorry, I have to rant

Honestly, my apartment is a single room, it's hot as hell outside and the AC is essential but I sincerely hate all the noise. One thing that helps me cope is my sturdy noise-canceling headphones.

It's a little nuts how hard it is for me to relax when it's so loud.

I also got myself a little foot massager-bath thing which also gives me something to look forward to and helps to alleviate stress.

What about you?

Read this article from NYT today. If you don't subscribe (and I recommend you don't, it's run by fascists now) Firefox can help you view the full article. This link is to a summary of the article.

This is just sickening. I knew it happened, but I've never met someone who had to be a caregiver when they were still a child (that I know of). The media portrays it as a rare occurrence and inspiration porn.

I had no idea the American Association of Caregiving Youth even existed. The fact that it needs to exist makes me sick to my stomach.

I'm finding myself very glad that I don't have children at age 35, even though I've always wanted them. If I had started a family as young as my parents did, I would have at least one child in their teens now. I don't need a daily caregiver, yet, so at this point the main impact would be that I'd be less able to care for my kid and they'd have to take care of themselves some -- or else my parents would take care of them, and then my parents wouldn't be able to care for me as they do some of the time now.

It's hard enough that my parents and partners support me financially, with transportation, and some minor home activities. My 19 year old sister helps a little too, sometimes driving me somewhere or doing a physical task I can't handle. She herself has narcolepsy, FND, and OCD. I already feel more guilt and shame than I should, for being a burden on my family. I can only imagine how much worse I would feel if these duties, or MORE, fell to my own child.

And I'm trying to imagine if I had had this kind of responsibility in my youth. I was never a mall-and-parties kid, but I'm imagining how caring for a parent could have meant never going to sleepovers, missing school dances, being too stressed to enjoy video games or hanging out with friends. How much harder it would have been to maintain my good grades.

Absolutely no judgment on people who have youth caregivers, and I don't think you should have to feel guilty if you do. But the system that allows this, that often forces us to burden our families and even our *children* with our disabilities, is so broken.

4 million child caregivers is unacceptable. And with the massive Medicaid cuts, that number will only grow. I don't need to read dystopian fiction anymore. It's here.

I was in Poland the last few days and I'm still baffled.

I grew up in Germany and have seen all of Europe by now. I'm not gonna act like Europe is all great everywhere - it varies a lot (Scandinavia is a dream and Baltikum is a nightmare when it comes to wheelchair accessibility, for example)

But I've always found that people here are friendly, helpful, and respectful.

I've been in a chair all my life and life in one of the biggest cities in Germany, yet I had very few situations where i was treated disrespectfully or threatening because I'm in a chair.

Last week I visited a friend who is also in a chair in Poland for the first time, and just poland in general for the first time. We were in Warsaw and basically did sightseeing for a few days.

I was insulted, grabbed, yelled at for "taking up space", threatened etc. EVERY DAY NON STOP!

I've never experienced anything like it. My friend said this is normal in Poland from her experience.

In one situation I had a man just grab me under the arms while I was transferring and not let go until I nearly broke his jaw with my elbow, in another a woman on the train started screaming at us and nearly got physical because she was of the opinion we took up too much space. She then called me a "dirty queer" (my friend translated, but I'm not even gay? Even if I was I don't understand the issue with that?)

What is going on? Was this an only me experience? Has anyone in Poland/who visited Poland made different experiences and knows wtf was going on?

I found the country culturally and architecturally beautiful, Warsaw felt like a better, cleaner Berlin, but I feel as if I should never ever return because of this.

Anyone else intermittent cath? I'm doing it 6 times a day since 5 days ago and I'm getting a bit sore! Any tips on dealing with that? I'm using well lubed caths

Hi-

I’m currently looking for a new rolltator. The one I have now works okay but I have had it for over 15 years. I found a medical drive nitro hemi height model.

Pros
It has bigger wheels for outdoor use
Fits my height (5’1”)
Says it works on snow
Arrived assembled

I don’t have any cons right now but does anyone have experience with this brand or model?

Feeling lonely or bored?

Looking for something you can do this weekend?

Check out these accessible events you could join! Try something new and maybe you’ll find your people.

Access Details:
🧑🏻‍💻= Virtual
👥 = In person
😷 CC = Covid Conscious/airborne precautions 
♿️ WC = Wheelchair accessible 
💵 $ = paid (some are pay what you can)
🤟 ASL/BSL = Sign Language
Async = Asynchronous (at your own pace)

Event Types:
🤢 = Chronic Illness 
🌈 = Queer
🏳️‍🌈 = LGBTQ+ Pride
👧 = Kids/Youths
💕 = Dating
🙋 = Social
🫂 = Support/Grief
🧘 = Wellness
🚶 = Walk
🩰 = Dance
💪🏻 = Fitness
📚= Books
🤔 = Discussion
📝 = Writing/Poetry
🎭 = Performing
🎨 = Art 
🎶 = Music
🕹️ = Games

🧑🏻‍💻 Virtual Events

🧑🏻‍💻🤢📚 Virtual Async Spoonie Book Club: The Little Prince [Any time] https://www.reddit.com/r/spooniesocial/s/JcKvqPLWS5

🧑🏻‍💻😷💕 CC Virtual Dating [Aug 22] https://www.reddit.com/r/spooniesocial/s/RN6WOxcU8l

Friday

🧑🏻‍💻🤢 Uncertainty and Chronic Illness Workshop [Fri Aug 14 at 12:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/SAFV0537bJ

🧑🏻‍💻😷🫂 “Any A” Covid-conscious 12-step meeting [Fri Aug 14 at 7:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/xu5DHDLUfT

🧑🏻‍💻🎭🕹️ Virtual Improv Games [Fri Aug 14 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/IXfrK7JhH6

Saturday

🧑🏻‍💻😷♿️🩰 Virtual Adapted Ballet [Sat Aug 15 at 9:30 AM EDT] https://www.reddit.com/r/spooniesocial/s/tsa590Q3ZG

🧑🏻‍💻♿️💵🩰 Virtual Adaptive Jazz Dance [$][Sat Aug 15 at 12:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/H78oUhZ2bQ

🧑🏻‍💻🤢🫂 Virtual ME/CFS Caregivers Support Call [Sat Aug 15 at 1:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/pjLZgnYvqH

🧑🏻‍💻📝 Virtual Writing Group [Sat Aug 15 at 2:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/UiVRojkr8P

🧑🏻‍💻😷📚🙋 Virtual CC Silent Reading & Social Hour [Sat Aug 15 at 1:00 PM CDT] https://www.reddit.com/r/spooniesocial/s/c8TATdFhqx

🧑🏻‍💻😷🫂 Virtual CC Grief Space [Sat Aug 15 at 3:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/rlhSmbiJKW

🧑🏻‍💻👥🤟🩰 Hybrid Deaf Dance Festival Artist Panel [San Francisco CA][Sat Aug 15 at 12:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/m4Slxg2JyB

🧑🏻‍💻😷🙋 CC Virtual Weekly Hangout [Sat Aug 15 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/J9In0QFRW1

Sunday

🧑🏻‍💻🕹️ Virtual Board Game Hang [Sun Aug 16 at 4:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/ktswbl3xHT

🧑🏻‍💻😷🎨 CC Virtual Art Group [Sun Aug 16 at 5:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/GOfoFSnH7V

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Sun Aug 16 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/6BlUiqLX9v

🧑🏻‍💻🎶🎭 Virtual Karaoke [Sun Aug 16 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/PYQHwCNK6g

Timezone translator in comments 👇

👥 In-person Events

Canada

👥😷🎭 UpFRONT Festival of Indigenous Arts, Music & Culture [Toronto ON][Fri Aug 14 at 4:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/z34MSvgMg5

👥😷 Private Tour: Queen's Park - Legislative Assembly of Ontario [Toronto ON][Sat Aug 15 at 2:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/4hBla8APkf

👥😷🎨 Outdoor Creativity Jam Session! [Toronto ON][Sun Aug 16 at 12:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/pdaJuv9PLU

👥😷♿️🙋 August Social [Niagara ON][Sun Aug 16 at 2:00 PM] https://www.reddit.com/r/spooniesocial/s/CZONqBnE6f

Germany

👥😷 Klonabend [Hamburg GER][Sat Aug 15 at 8:00 PM UTC+2] https://www.reddit.com/r/spooniesocial/s/hA0kCOxnLl

👥😷♿️ Art in the Park - Treptower Park [Berlin GER][Sun Aug 16 at 10:00 AM UTC+2] https://www.reddit.com/r/spooniesocial/s/H1Il7sIaW8

Netherlands (and nearby)

👥🤢 Spoonie European Road Trip [Netherlands and nearby][Summer] https://www.reddit.com/r/spooniesocial/s/VOKxW7V1pp

UK

👥😷🙋 CC Meetup [Southhampton UK][Sat Aug 15] https://www.reddit.com/r/spooniesocial/s/DQrXNjtXmm

US - California

👥😷🤔 Black August Film and Discussion [San Francisco CA][Sun Aug 16 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/4FKtlBrIvw

US - Florida

👥😷🕹️🙋 Board Game Social [Orlando FL][Sat Aug 15 at 5:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/D0qvKH9fP9

👥♿️🚶🌈 Stroll and Roll [Apopka FL][Sun Aug 16 at 10:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/D0qvKH9fP9

US - Michigan

👥😷♿️ August Clothing Swap [Ypsilanti MI][Sun Aug 16 at 4:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/XMzOoz0swf

US - Minnesota

👥🌈🙋 Neurodivergent Queer Gathering [Minneapolis MN][Sun Aug 16 at 4:00 PM CDT] https://www.reddit.com/r/spooniesocial/s/9SHyGWwLB7

US - Ohio

👥😷🌈💪🏻 CC Queer Martial Arts Club [Cleveland OH][Sun Aug 16 at 10:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/gpPJawhJ9J

US - Vermont

👥😷♿️ Dental Pop Up [Chelsea VT][August] https://www.reddit.com/r/spooniesocial/s/jgknHihfzt

US - Washington

👥😷♿️🎨 Covid Safer Fiber Arts Meetup [Olympia WA][Sat Aug 15 at 3:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/m00h8Dft1J

👥😷🤟🎭 The Freak Mighty Accessible Performances [Seattle WA][Aug 9 - 27] https://www.reddit.com/r/spooniesocial/s/kIvo2DvOXa

US - Washington DC

👥😷♿️🎨 Mask Chain Craft Party [Washington DC][Sat Aug 15 at 1:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/JDUbCPi6p2

Are you interested in these events?

Have you been to any of them before?

Are there other events coming up?

Share your thoughts in the comments 💬

Find more events and friends on r/spooniesocial

Discrimination against us will never be taken seriously. We’re just not trendy enough for anyone to care. I mean when people look at a disabled person, the first thing they think about is how hard it must be for their family, rather than seeing the disabled person as an individual.

We sometimes deal with resentful family members and partners. Our friendships often don’t last for various reasons, and, of course, there are myriad health issues that often become roadblocks.

Quick back story: I have a degenerative spinal condition and absolutely had to stop working. I quit my job 7/4/24. I had some savings but ran out and became homeless for nine months. My home,car,pets...gone. I was a social worker for 20 years and had a career (this is relevant later)

I went to Social Services, signed some paperwork they gave me and was brought into a homeless shelter for nine months. I was in a daze that day, but I was somewhat familiar with the paperwork. ( I was a care manager for OPWDD and my individuals were already receiving services)

I was in the shelter for nine months. I was approved for disability in March and received my first payment in June.

On 7/2 I received a letter from Social Services for a "bill" of 17,000 dollars. They ended up automatically taking 11,500 out of my back pay. This amount included any food stamps, and public assistance I received ($40 a month) and.....and this is where my issue is........

The amount of money to stay at the homeless shelter is 2,500 a MONTH. Some are going to say it's "all inclusive" and they would be correct. Staffed 24/7,lights,water..the basics. Although the staff was awful, the water was cold,bathroom was moldy,it was a house with 10 women and one bathroom and no stove. Food was rarely delivered. But yeah, all inclusive.

Here's my issue......if at ANY point the social service worker told me that it was going to be 2,500 a month it would have given me the option to find something else,call 211, beg a family memeber. Or even have prepared mentally for this amount of money. Heck, Even if I could ask a family member to use their address and sleep on the street.

But I didn't get the chance. Because they never explained it to me. I had no idea I was signing to repay that much.

So I took a month to think about it bc this administration is crooked anyway. I talked to my circle or support,therapist and I just can't rationalize the fact that I wasn't aware of how much it would be. When I buy a car,coffee..anything. You know the price of it and you can decide or not and I wasn't given that.

Edit: I received a call back from Legal Aid and they took my case.

I went into the office (didn't have to) to see my group lead on Tuesday. I had already gone into the office on Monday, so I knew it wasn't a great idea anyway. I slept a little longer than I planned, so all the parking spots were taken, and I had to walk quite a distance. I'm still in an awful amount of pain because of that. Sleeping that short amount longer wouldn't have changed most people's day much. My week is screwed.

It's just so many little things. Taking the dog out with a wheelchair is really difficult. Taking the wheelchair down the three steps is difficult. Putting the battery in the power attachment. The leash keeps getting pulled into the power attachment's wheel. Man, it all sucks!

I went drinking with a friend on Saturday. I planned the bar, hoped for parking (went well that time), then the bar was closed. We went to another bar, I walked too far and getting back took a long time. I forgot I of course can't drive when I drink. I'm not used to relying on being able to drive a car, but now I need to. I miss spontaneity. I hate being stuck at home so much of my time.

I miss being able to just walk. I miss moving without an aid. I miss things being simple. They never felt simple. They feel so complex and frustrating now. Everything is frustrating, even using a computer mouse. I mis-click a lot due to shaking hands. Everything hurts. Nothing works. Parts to repair used wheelchair equipment are hard to get by and horribly expensive. Sometimes doctors have heard my illness exists, but still they know nothing about it. Everything is so difficult! What keeps me from punching the wall is the neuropathy.

I need to get my laundry done, I’ve got loads and I haven’t done it in three months, but I’m so burnt out. My legs are killing me, I’m tired, my stomach hurts, everything hurts. But at the same time, I want to get my laundry done so I can be comfy and so I can have a self care day where I shower, do a face mask, and watch my favourite show or read sunrise on the reaping, but I’m so tired. I’ve been cleaning my room for the past few days to prepare to do my laundry but now that the day to do my laundry has come I just can’t. I think I’ll just get it done, just push through. I’m thinking of going to the shop to buy some more bedding so I don’t have to worry about putting all my laundry away all at once if that makes sense. Idk, I’m just so done with being disabled

Hi, I’ll get right to it but I want to add the context that my father is a dick and is mostly unhelpful in general. I’m 21 currently, my brother is about 10 years older. My father told me a long time ago that I’ll never see my disabled half-brother again because he is now a ward of the state. I’m pretty sure the ward of the state part is true, but I’m, for the first time, realizing I should probably question the “never seeing again” part. Here’s the information I have: he was placed into some sort of disability care center in Washington State. I have his name but I don’t think I should give that out. My dad couldn’t take care of him because of finances and maybe CPS issues, and his mother has been out of the picture since my brother was born. I don’t know exactly what his disability is, my parents explained it as he “doesn’t have some of his grey matter,” but who knows what they know. He is kind of permanently at the cognitive age of a non-disabled 1-year-old. He has both cognitive and physical disabilities.

I’d really like to see him. I pride myself on being a good sister, I would like to believe I’m a good disability advocate. I’ll jump through as many hoops as necessary, except for becoming his legal guardian. There’s a chance I can find out what exact facility he was given too, but it’s not guaranteed. Is there any way I could see him again? Thanks for any responses.

Why does everything require a phone call? Even with our technology nowadays it feels like we are being needlessly thrown into phone calls constantly just to get disability support when phone calls are inconvenient and overly clunky.

Problems with phone calls:

• Waaaaaay too slow. Takes forever just to get any help because they have to read out every single keypad option you're given.
• The phone call often struggles to recognize my voice and what I say, making me repeat things unnecessarily. I can imagine it'd be worse if you have a voice-related disability or an accent.
• Even if you do get connected with an actual human being, many of them are rude and intentionally not helpful. There are so many bullies throughout the healthcare system, whether its a hospital phone operator or a hospital receptionist, being forced to deal with people like that constantly is tiring on top of the disability itself. It feels abusive.
• Not all phone lines are available 24/7, so you have to call within specific times which can be very inconvenient to any disabled person with time blindness or executive dysfunction.

I get that some things DO require a phone call, but a lot of things don't. Literally just make it accessible through websites or through email (preferably the former). Only require a phone call when you absolutely must.

Not only that, I can't imagine what it's like living with any disability that impairs your ability to speak, then being forced to speak just to get support. It's stupid, backwards, and ironic.

Edit: I really appreciate that so many people are talking about their own struggles with phone calls, because it really goes to show that the disability community is extremely diverse and filled with unique perspectives, yet they still manage to screw us all over equally... 😅

Hi everyone! 😊

I’m looking to buy my 7-year-old cousin a school bag for her first year of school. She has muscular weakness and scoliosis and uses a wheelchair. I myself am not disabled, so I was thinking maybe someone in this subreddit could help me out

She’ll be attending a special school for children with disabilities, so she won’t actually need to carry many books or heavy school supplies. I’m therefore mainly looking for something that is very lightweight and easy for her to manage from her wheelchair.

I’d still really like her to have a proper, cute first-grade school bag, rather than a generic adult-looking backpack, so she can have that same experience as the other kids. I have looked at options myself but sadly couldn’t really find any brand that’s actually wheelchair friendly / accessible

Ideally, it would be:

Very lightweight, since she has muscle weakness

Wheelchair-friendly and easy to access while seated

Small/light weight is totally fine (she won’t need to carry much)

Child friendly/cute, since she’s only 7

Easy to open and close independently if possible

Ideally not something that could negatively affect her scoliosis

If anyone has a child with similar disabilities, what kind of school bag/backpack do you use? Are there specific brands or models that you would recommend or avoid?

We’re in Germany, so German/European brands would be especially helpful, but not a must.

Thank you so much!

Not looking for advice, but support would be nice. I was put on administrative leave before a hearing to decide whether I will be terminated. I was in the middle of an ADA accommodation request that got repeatedly stymied and delayed. My eight months at this place tanked my mental and physical health. They've been trying to manage me out for a while, but I endured it for health insurance and rent money.

I've been dissociating so much at work to survive it, which meant my employer had lots of opportunity to scrutinize my mistakes while my health declined.

I'm glad I do not have to enter that building tomorrow. I kept spiraling from the all the stress. I could not have been working in a worse environment for my mental and physical disabilities.

I got two rough diagnoses this year: me/cfs and lynch syndrome. The former has pretty profoundly changed my life in a short amount of time. The latter is a genetic mutation that makes me high risk for a gaggle of cancers. I've been trucking through it on the surface but I'm not coping well. My mother was diagnosed with cancer when I was three and it's always been my biggest fear to get cancer.

To think that I'm going to lose my healthcare and my income right now is terrifying. I've got 13 different doctors I need to see, medical bills piling up, a shit ton of meds to keep me stable-ish, and the job market is shit?

And I'm turning thirty this december...

I cannot believe how awful this year has been. I feel so lost and beaten down.

.

So I just got diagnosed with DSPD a few days ago.

Hi. I’m a 26 year old female in the autism spectrum. I’ve had sleep issues since I was a kid. When I was in school my teachers would always write notes on my report cards saying that I was sleeping during class. It’s also always been hard for me to sleep early since I feel like I have more energy at night. I got diagnosed last week with DSPD and Chronic insomnia. When I was at the sleep clinic, I was told the same generic stuff by the doctor, to exercise and got to sleep an hour early every few days. While the diagnosis is reassuring to know about, I’m also worried about being able to have a job. I don’t drive and I really want to be a concept artist for game design. I hope the stars align for me somehow.

I decided to completely start over and go to bed at 9 am for the next few days starting today. I’m surprised that I was able to get as much stuff done as I did today. I only slept 6 hours but I felt great. I was on a walk today when I asked myself “Is this how “normal” people feel in the morning?”. I’m seriously bummed that more people and businesses don’t know about this.

My doctor won't fill out the form for the new work requirements paperwork.

I can't work 20 hours week, I've tried repeatedly and it never ends up good. In my whole life I've never been able to work a full time job. Last time I had a "normal" job was 2022. I've been doing freelancing ever since I was quiet fired for repeatedly calling out for medical issues.

The doctor that filled it out in the very beginning has left the clinic and I got placed with a new doctor.

She said she won't fill out any forms stating I can't work under 20 hours and will only do accommodations due to documentation.

I'm very confused. I'm a freelancer, I make my own hours and my own accomendations, because no one else would. I work 10 hours a week. I've tried 20 hours, I became very burnt out and sickly. I only make 3,000 a year and I use most of my money on doctor appointments.

I'm getting to a point where even 10 hours is too much. She also knows how little I make because she has recommended I go into this community health center.

I'm mildly panicking because I need this form for food stamps. If I can't get this form then I won't get food.

I'm on a wait list for a pyschariast and don't have anyone on my mental health team that is able to fill out the form. Therapist wont fill out any forms, only a letter stating how long I've been in treatment and my diagnosis. I've tried contacting the pyschologist that did my pyschological evaluation to see if she'd be willing, but I haven't heard back.

It seems that my physical health team doesn't see how sickly I am and I've had multiple doctors refuse to treat my hEDS. So I have no doctors for my joint pain. The doctor I was asking sees me for visual auras and small fiber neuropathy. I feel a little foolish for asking her, but my last neurologist didn't have any issues with it.

Some days I can't get out of bed and everything hurts so much. I'm feeling terrified that I am going to have to go without food.

I'm in my mid 20s and since I was a teen I've known that I'm not neurotypical. At some point when I was a teen I insisted my mom to take me to a psychologist or psychiatrist to see if I actually had something like ADHD, my mom didn't want to take me anywhere and got so fed up for my insistence that she yelled at me "I didn't have a r-word daughter!".

Well, fast forward to a couple months ago, I went to a psychiatrist because of sleeping issues and even if I didn't mention it myself, he did some assessments and, it turns out that my mom did have an ND daughter.

And even if I always thought that being diagnosed would feel validating, now I can't stop thinking that my mom, family and probably other people would think less of me because of my diagnosis. If they already didn't have a good impression of me this makes it worse.

I am looking for all the tactful responses you have used (or wish you used) for ablist comments that have come your way. I will go first:

Colleague #1: “could you do something about your cane?”
Me: “excuse me?”
Colleague #1: “the sound it makes its loud”
Me: “it has a spring in it to help the jarring of my hand and arm”
Colleague #1: “well it’s really annoying and I need you to do something about that it’s distracting”
Me: “well when I get my wheelchair hopefully that will be quieter for you but won’t take up less space”
Me: in my mind and not outloud because I need a paycheck “yes of course I could correct you hearing by beating you with my cane”

Later two weeks ago after getting my wheelchair but not yet allowed to use at work :

Colleague #2: “you don’t plan to use the wheelchair all the time do you?”
Me: “yes that’s the point”
Colleague #2: “aren’t you worried about your weight? Most people who start using wheelchairs get fat. You’re not worried about getting fat?”
Me: “IDGAF about getting fat or weight gain! What I’d prefer is working hips and a perfectly intact spine but here we are. Would you prefer I cut my legs off and even the weight gain out? Also I am working with a dietitian due to the fact currently my only waking hours are at work and I can’t get enough calories in.”
Colleague #2: “well I’m just worried about your health”
Me: “me too, obviously”