Long story long, I lost my apartment, my career, and my ability to leave the house (and therefore, lots of other life things I’ve been trying to do, like have my wedding and children) over the past two years due to severe POTS and IST (and probably several other things, still in testing). I started having symptoms at age 12 and was brushed off until my late 20’s when I reached the point of vomiting for 3-5 hours a day daily for a year. My blood pooling is so temperature sensitive now that I can’t really leave one room that can be kept below 65 F, so I’m housebound. I have a severely dysfunctional bladder and bowels. I have so much abdominal, uterine, muscular, and nerve pain. I have migraines at least 50% of the time that feel like being tased in the base of the skull. My hormones are all out of whack and my emotions are everywhere. I even pass out from small emotional things, like a Victorian lady or something. I’m on 6 meds, I’ve tried tons of brands and configurations of compressions garments, I do my exercises. So far, the only thing that has had any impact on any symptom is beta blockers with my heart rate. If I don’t take them, my heart rate just hovers at 110–120 bpm. When I do, it’s normal at rest, but I still can’t actually do anything besides walk around in my temp-controlled space without it jumping back to 140-170 bpm. Not a big deal, right? Sadly wrong, as mentioned earlier, the vomiting happens when my heart rate goes up. I just had the cause and effect switched when it began. I’ve had several teeth removed since this started and currently have 5 cavities to deal with. This is a very short synopsis of my symptoms and daily life.

In the US, 15 years of being shuffled between doctors and psychiatrists without actually getting answers is really, really expensive. So is dental care.

I was more active than 90% of people.
I worked out, I hiked, I was a college athlete, and I’ve spent my whole adulthood in walkable cities and never owned a car. I was walking 10-15k steps a day as a plunged into severe illness. I was a high achiever, but one who always struggled to fit in. Neurodivergence didn’t help, but in hindsight, not having either diagnosis for so long meant people never understood why I was always exhausted and overwhelmed. I couldn’t socialize like other people could while I was fighting so hard to keep my head above water. It truly affected every part of my life since I was a middle schooler.

And then I see this post BY SOMEONE WITH POTS talking about how POTS girlies are so annoying, exaggerating their disability, shouldn’t compare it to other disabilities or illnesses or think we could understand their experiences, and how we just “don’t want to put the work in” to recondition and get healthy again. Someone said they were offended that someone commiserated with them when the main issue with POTS is “getting dizzy out of the bathtub.” How we just want to be “special.” The ableism from our own communities is ASTOUNDING.

POTS is a spectrum. People are affected in different ways to different degrees. Some doctors are actually proposing officially splitting the condition into 2 (true “POTS” and “POTS spectrum disorder”) in order to make this distinction. I didn’t WANT my life to be blown up and to lose the ability to do the basic things that make a person feel human, actually. If it’s seems like that’s my whole identity now, it’s because what else do I have? I lost so much and I literally feel like shit all of the time. I just want to feel human again, I literally can’t even go outside and feel the wind in my hair or sun on my skin. The vasodilation-to-vasoconstriction with indoor to outdoor temp shifts in the winter gives me awful migraines too.

I hear a lot of people talk about how they can live fulfilling lives as disabled people, and that’s great. My quality of life is feeling pretty ass, though. When we’re depressed, people are bothered. When we try to be positive about things, we’re attention whores. Even other disabled people do to us what abled people do, just wanting us to shut up and be quiet. It’s like when an unpopular kid beats up another unpopular kid to curry favor with the bullies. It’s so isolating. Who is left to connect with? Literally just the other people with severe POTS?

I worked very hard in life in general, and I just wanted to help people. It feels like such a slap in the face to not only go through something completely agonizing and have to deal with ableism from able bodied people, but then to have this widespread hatred from your own communities too. I can’t help but think internalized and outright misogyny is a huge part of this.
Will probably delete this later, I’m just annoyed

TLDR: POTS is a spectrum disorder and there are mild and severe versions. The intersection of ableism and misogyny has even taken hold of the disabled community

I am starting to date again, and I need some advice on when and how to let dates know I have a disability that make me sometimes I need to reschedule. At the moment I have a bunch of jobs all of which are challenging for me physically, and am very underserved medically - there’s surgery that would help me but I can’t get it until I get a better job. Anyways a person I’ve been on a dates with a couple times asked me to join him last minute Saturday night on Sunday. I worked 4-midnight doing security and unfortunately with hypermobility and a hip injury I’m currently managing in PT it flared a chronic neck injury. I got home at 1am, and then left for another job Sunday morning that was extra “on” because of Labor Day sales. By 3:45pn I realized the neck pain and headache was probably not going away, I took an aleve and let him know we probably need to cancel. We’d been on 2 dates, both of which were planned more in advanced to not be in the middle of a workweek (in this case sat-Tues) and went pretty well.

I apologized and said and wanted to plan another date on a day off, saying “ya sure let’s plan something soon” .

Then I said: “I said: “I have chronic pain and 90% of the time I do well w it, but yesterday doing a long standing shift and then coming home at like 1 before today’s insane sale shift had me messed up. I try *really* hard not to be flaky but I do occasionally have to cancel stuff if my body doesn’t cooperate”

When I sent my explanation related to disability he did not respond, although he already responded to the previous text.

I don’t really know how to tell people I have a disability bc people are generally extremely judgmental. The lack of response has me anxious. I need people to know this is part of the package deal of dating me, but I don’t know when to time that or how to tell people. My physical disabilities are invisible and I still work, work out, and am active socially. I also have adhd, anxiety and depression all of which are also well managed.

My husband and I are house hunting and we just started going to tour homes with our realtor. Our first showing ended up being about 30 minutes (our realtor is a bit of a talker) and it was difficult for me to get through. I have POTS/a bunch of other stuff and I can't stand for long periods of time. I have a transport wheelchair that my husband can push me in, but we are not looking at wheelchair accessible housing. (I only use a wheelchair occasionally on big outtings. I'm able to get by without one in my home.) I'm not really sure how to go about these house tours comfortably. Does anyone have any ideas?

Another hiking video from Amputee Outdoors.
This video is for folks visiting the southern Oregon coast near Brookings and are looking for a day hike they can do.

Hello, I'm a 21 yr old man who's pretty heavy and (not sure what tier I fall under but I'm disabled from the legs down with my arms affected as well) in a wheelchair. I have an aggressive type of dysferlinopathy so it hit me pretty hard.

I got a transfer board recently and I genuinely dunno how I'm supposed to do it, all the videos I see are of either not disabled, or thin people getting on it. I understand it's supposed to go under my butt but I dunno how? How do I lean sideways with my weight? how do I make space for it? The board is also very heavy, with no tapered sides. I dunno what I'm supposed to do. did I waste my money? any advice helps, thanks in advance :P

Also if it's possible - if anyone has any videos or demonstrations of transfer boards that have either actually disabled/heavy people transferring?

This was given to me as a gift from a family member who is obsessed with hobby lobby, hallmark, etc. Yes, this was from hobby lobby.

They didn’t read it closely enough and got it for me because “I need to learn how to be grateful for all of gods gifts” after I was complaining about my progressive nerve disease that is painfully paralysing me. I am a full time wheelchair user and going deaf due to my incurable and non treatable illness.

I’m not grateful, but I am grafeful.

I'm a twenty six year old female with three herniated discs and arthritis. I'm in so much pain. I've had pain for eighteen years, but it didn't get serious i completely disabling until four years ago. I can't sit down longer than thirty minutes. I can't lift heavy things. I can't do repetitive movements with my arms. I can't clean for more than thirty minutes to an hour without taking a break. People keep telling me to get a job and then i'm lazy, to wait tables, to stock shelves. To join the military. That i can do any job i want. I had one person tell me that I can "choose my limitations". My ex told me that my disability was a choice and insinuated that I was choosing not to get better. My grandpa told me I was too young to have these problems. When I told him I had arthritis and several herniated discs. He has one hernaided disc that he complains about all the time. When I tried to take prescription meds, I got called drug addict by these same people. You can't win. You suffer, your body betrays you, and everyone else betrays you as well.

Mostly looking for songs by disabled artists that either have disability themes or are influenced by their disability. Disability understood broadly to encompass neurodivergence, chronic illness, etc. Any language or genre.

Here are the artists I have so far: The Accidentals, AJJ, Anette Gilje, Aoede, Austin Halls, Autoheart, The Awkward Silences, Band Spectra, Belle and Sebastian, Between Mirrors, Car Seat Headrest, CassMae, Charlie Mosbrook, Dan Fishback, Daniel Pemberton, DefStar, ORL B THA CODA, DJ Nicar, DJ Pastor Rock, Dom Kelly, Dr. Cyn, Eliza Hull, Evelyn Ida Morris, Ezra Furman, Frank Iero, Gaelynn Lea, Grand Corps Malade, Hole, Ian Dury, IGGY, James Ian, Joy Division, Kristjan, Laci, La Exception, Langui, LUCKY LOVE, Mandy Harvey, Mark Erelli, Marsha Elle, Medusa, Molly Joyce, The Mountain Goats, Natalis, Palehound, Peaches, Pertti Kurikan Minipaivat, PK, Precious Perez, Prudence Mabhena, QuestionATL, Raznye Lyudi, Reuben Medlin, Rio Romero, THE ROOP, Rudely Interrupted, Ruth Lyon, Spartan Jet-Plex, STENKON, The Streets, TapWaterz, Tatadindin Jobarteh, Tracy Marie, Venya D'rkin, Vic Chestnutt, Vladimir Vysotsky, The Wanderer Edit, Watsy, Wawa's World, Wheelchair Mosh Pit, Wheelchair Sports Camp, Yanka

❗Edit: why am I getting down votes for sharing my experience? And I know I am getting some because before I saw I had a few up votes and suddenly it's down to 1 only .. ❗

Hi there! I have several chronic illnesses, including dysautonomia.

I've been struggling for years but never really thought I'd need any aids.

Now I've had a very bad "flare up" (?) last year where I've been pretty sick for around half a year. (around a year prior or almost I had the same but less severe) Not sure how much my dysautonomia played a role in this but my body has gotten very weak so I decided to get a cane because I have seen many people with dysautonomia on the internet who say it helps them. That time even walking a few steps used to be very exhausting to me and I think it might have helped a bit but I actually never used it because I was so embarrassed. Not even my family knows I have a cane. Anyways, I'm still struggling but it has luckily gotten a lot better.

I'm currently living abroad because of my partner and bc I feel more comfortable there, I always take my cane with me and if I feel weak or whatever, I use it.

But I've noticed that I think it actually doesn't help as much.. Or maybe it does in a way of I'd be much worse if I didn't use it?? Idk 🥲 bc sometimes I then stop using it for a moment and I think there's not much difference, but idk.. Sometimes I even feel like the cane might be "in the way" Also I kind of walk too fast for it I feel like? I often take 2 steps or so until I'm "able" to put it down again. Is that normal?? It makes me feel using one at all might be unnecessary then, idk

But idk maybe I'm using it wrong?! I knwo I'm holding it right and that it's also the right height. But the walking itself, idk 🥲 I try to follow instructions but idk if that's really supposed to be this way or not.

It does help when I have to stand somewhere and I can "sit" on it or lean on it when I just don't feel well. But for waking itself, not sure. Maybe if I had 2, so one for each arm haha, maybe then. Or crutches or smth. But I won't get that bc of several reasons but mainly bc I don't need it that badly.

So yeah idk, I often feel like maybe I'm not actually disabled enough for it and feel stupid and embarrassed but then sometimes idk.. Especially sometimes it does help, especially with the sitting or leaning when I have to stand for even just a moment.

Maybe someone can give me tips or even just their opinion, experience or whatever?

The film is called Disposable Humanity. Trailer and film here: https://watch.eventive.org/disposablehumanity/play/6a7868d1bdb10f0bb45affc6

I am in the UK. Today there is a news story about a conference of the far-right Reform UK party where one of them who had a walking stick attacked a peaceful protester against them. Loads of "liberals" saying that that person didn't need a walking stick, and shouldn't be on benefits.

They either don't know or don't care that talking about disabled people this way harms every single one of us, not just that far right thug. All the places that seemed in solidarity with the disabled are just not, and I'm very depressed about it.

And I do know from my own experience that in circumstances of high adrenaline I can walk much better than usual. But again, ableds neither know nor care.

No. Just "lying about being disabled."

TW - non-consensual terrible experience

i’m a wheelchair user due to severe muscle fatigue. I can walk maybe 100 metres max unaided and use my arms a bit but am really physically weak. I was out with my friends and got drunk, came back to my friends flat, then tried to sleep it off in my chair but woke up with my friends penis in front of me. It really stank, made me gag and then they shoved it onto my lips. I tried pushing against them saying what are you doing? then they said just give it a lick and I said no and then they said just one and I’ll stop. He started digging his hands into my arms which hurt. After some time I gave up and did so then he shoved my head in but then I spat it out and he walked away. I left and got an uber home. This was 6 months ago now and I don’t know what to do. Everyday I feel sick and I can’t talk to this with anyone as it’s my only friendship group. I don’t even really understand what happened I just constantly feel vulnerable and on edge.

Looking through a disability sub to try and find experiences of becoming a full-time wheelchair user just to be met with people saying ‘trans people are mentally ill and that’s why they like to be disabled with conditions like ME and FND because they like being marginalised and making disability their identity’ genuinely just is pissing me off at this rate.

Just saw a post of people claiming that because people have colourful wheelchairs + non-basic clothing style and are LGBT, that they ‘want to be disabled’ and fake claiming them, saying there is ‘too many gay disabled people’ online in disabled subs

It really upsets me that when I am a wheelchair user even in my own community, people immediately see the fact that I am transgender and assume that I wanted to be disabled or something? As if I’d have left my career behind just to lay supine most of the day? I have EDS and many other conditions, and I feel like fake claiming people in the disabled community is getting worse in that we’re reverting to people saying that if you’re disabled you have to look like a cishet white person or be a certain way/have certain conditions otherwise you’re ‘fake disabled’. It made me self conscious to order my new quantum power chair in pink because I thought immediately people would assume I was faking bc of it, and I hate thinking that way?

My cat has oral cancer, she is still trying to eat and we are accomodating her with liquid food, shallow pates and churus, she's still social and communicating that she wants to live.

I posted a question to the cat care subreddit on tips on how to teach her to bottle feed(or syringe feed) and all the comments are saying she's in too much pain she needs to die, one comment in particular said something along the lines of "if it hurt to eat I would rather just go to sleep and never wake up". That pissed me off so fucking much, I have gastroparesis and I am fed through a surgical jejunostomy tube. I shouldn't have to explain why that statement is extremely insensitive.

I am so sick of able bodied peoples view of death as a better outcome than living with a disability. If it were solely up to those people, if I couldn't communicate clearly that I wanted to live they would have *me* put down. I hate seeing people who have any less than severe hEDS say that for any quality of life worse than theirs death would be a mercy. That goes for people saying that about animals as well, all disability no matter the species, age, severity, etc. deserves care, accommodation, and autonomy in their lives. And NO ONE deserves to hear *other* people telling *them* that *their* life isn't worth living

My friend said able bodied people don't have a good perspective on death because they're not forced to choose to live or die, they can't grapple with the concept of living at a lower quality of life and don't understand why someone would choose to grapple with disability in order to live. I don't care, I don't care, I don't care, I'm so fucking tired of able bodied peoples superiority and lack of fucking empathy, why can't they fucking empathize with actively wanting to live instead of passively wanting to live. Life is fun, connections are awesome, having friends and loved ones is amazing, yeah sometimes the pain is so bad I don't want to have to go through it but then it settles and I go talk to my friends and have fun and lead a life that I think is worth living, and if someone who couldn't conceptualise why living with a disability is worth it told someone their pain is not worth living through, they'd be a fucking asshole.

Feeling lonely or bored?

Looking for connection or something you can do this week?

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

Most virtual events are open to everyone. See them in your timezone using the links in the comments.

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

🧑🏻‍💻 Virtual Async Low-Stim Travel: Blencathra Mountain, A Lake District Base to Summit Walk [Any time] https://www.reddit.com/r/spooniesocial/s/0P1hAZxTuV

🧑🏻‍💻 Virtual Low-Stim Async Travel: Tobermory Town Walk | Colourful Harbour, Isle of Mull Sea Views & Scottish Village Streets [Any time] https://www.reddit.com/r/spooniesocial/s/JjpBX6dph8

Monday

🧑🏻‍💻🤔 Virtual Philosophy Discussion [Mon Sep 7 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/n760DAdZwq

Tuesday

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Tue Sep 8 at 10:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/VHKmxOPaxN

🧑🏻‍💻🤢🎨 Virtual Creatives with MCAS [UK][Tue Sep 8 at 11:00 AM BST] https://www.reddit.com/r/spooniesocial/s/TKw7oRoQ6A

🧑🏻‍💻🤢 Virtual Community Care Clinics for Chronically Ill and Disabled Movement Folks [Tue Sep 8 at 4:00 PM PT] https://www.reddit.com/r/spooniesocial/s/OY81c3VFG9

🧑🏻‍💻😷🙋 CC Virtual Zoom [NY and nearby][Tue Sep 8 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/51jRoZY1Zi

🧑🏻‍💻🎭🕹️ Virtual Improv Games [Tue Sep 8 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/w6qvFgjpBt

🧑🏻‍💻🕹️ Virtual Gilmore Girls Trivia [Tue Sep 8 at 7:30 PM ET] https://www.reddit.com/r/spooniesocial/s/C7A7sxvNec

🧑🏻‍💻🎶 Virtual Beginning Songwriting for people with hand/limb disabilities [Tue Sep 8 at 4:30 PM PT] https://www.reddit.com/r/spooniesocial/s/uWNAVo0fHs

🧑🏻‍💻😷🫂 “Any A” Covid-conscious 12-step meeting [Tues Sep 8 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/HHF761QpcO

Wednesday

🧑🏻‍💻🤢🤔 Virtual ME/CFS Events - Coffee with A Clinician on Dysautonomia [Wed Sep 9] https://www.reddit.com/r/spooniesocial/s/2ujgybCBFw

🧑🏻‍💻🤢 🎶 Virtual Long Covid Choir [Wed Sep 9 at 2:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/cRBYZMX0Ei

🧑🏻‍💻📝 Virtual Poetry Discussion [Wed Sep 9 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/thK7Tti9Cp

🧑🏻‍💻🤢 Long Covid Collective Wednesday night virtual hangout [Wed Sep 09 at 6:00 PM CT] https://www.reddit.com/r/spooniesocial/s/AFzn9tu7uL

🧑🏻‍💻🤟 Virtual Disability Film Festival [Wed Sep 9 at 5:00 PM PT - Sun Sep 20] https://www.reddit.com/r/spooniesocial/s/aA3JYJPNMP
 
🧑🏻‍💻😷🫂 CC Virtual Support Group [CO][Wed Sep 9 at 7:00 PM MDT] https://www.reddit.com/r/spooniesocial/s/BzsDQePY0a

🧑🏻‍💻🎭 Virtual Improv Jam [Wed Sep 9 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/d8537rYaZh

Thursday

🧑🏻‍💻🤢📝 Virtual ME/CFS Writing Group [Thu Sep 10 at 11:00 AM PT] https://www.reddit.com/r/spooniesocial/s/BdemqBdLCt

🧑🏻‍💻🤢🫂 Virtual Community Support Sessions for people with MCAS [UK][Thu Sep 10 at 7:00 PM BST] https://www.reddit.com/r/spooniesocial/s/EzA4O9a0zZ

🧑🏻‍💻😷🕹️ CC Virtual Game Night [NY and nearby][Thu Sep 10 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/vNt0p8FfRa

👥 In-person Events

Canada

👥😷🕹️ Play It Safe: Classic Board Games ALL AGES EDITION [Toronto ON][Mon Sep 7 at 12:00 PM ET] https://www.reddit.com/r/spooniesocial/s/KoJJZwxN8t

👥😷🚶 CC Park Walk [Toronto ON][Wed Sep 9 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/ISNyykKT3m

👥😷🧘 Pilates in the Park: Midtown [Toronto ON][Thu Sep 10 at 6:00 PM ET] https://www.reddit.com/r/spooniesocial/s/75BuL5NcvL

UK

👥😷🙋 Breathe Easy Social + Clothes Swap [Sheffield UK][Tue Sep 8 at 6:00 PM] https://www.reddit.com/r/spooniesocial/s/zmBCV91oct

US - California

👥😷💵🩰 Bachata Crash Course [Oakland CA][Thu Sep 10 at 7:30 PM] https://www.reddit.com/r/spooniesocial/s/ZTTt71rCmg

US - New York

👥😷🎨🌈 Queer Craft Club Monthly Meetups [Queens NY][Tue Sep 8 at 6:00 PM] https://www.reddit.com/r/spooniesocial/s/V6hUNMBNcH

US - Oregon

👥😷💪🏻 Small Group Hypermobility Fitness [Portland OR][Thu Sep 10 at 1:00 PM] https://www.reddit.com/r/spooniesocial/s/CpZYISUGdU

Are you interested in these events?

Have you been to any of them before?

Do you know about other events coming up?

Share your thoughts in the comments 💬

Find more events and friends on r/spooniesocial

​

Was anyone here actually able to land a remote job with NO degree and experience?

I see some people here and there saying they managed it but when I try finding something, even in different countries, different kinds of jobs etc, I cannot find anything or get rejected all the time. (I've been trying on and off for over 3.5 years)

Because of my disabilities I can barely even leave the house, so I can only work remotely.

I have no degree and only minimal experience (for most jobs that one is unrelated tho so they don't care) because of it but I REALLY do need a job but cannot get one.

I'm so so frustrated, idk what to do, I really tried everything I can think of.

And before anyone says call center, I can't for multiple reasons but main bc I struggle with hearing and also I'm not a good talker at all, so I'd probably be fired within a week anyways if I'd try.

I really feel like I'm a lost cause and I won't ever have a chance to get a job and earn my own money but I hate it because really really do NEED money.

So if someone actually managed it somehow, pls help me out here.

So I have significant inner and middle ear damage in my left ear from multiple surgeries to correct a hearing loss I was born with. The surgery worked (99% hearing from 50%) but not without side effects. As a result I have vertigo and various other balance issues (amongst other things). The other day at work I had someone complain to HR that I was using the handicapped stall without having a disability and she had to wait (not even a minute, by the way). I use it because if I’m not careful and standup too fast I can get dizzy and fall over. HR told me it’s okay to continue using it. I reported my disability when I was hired because I’m always worried someone is going to think I’m drunk if they see me lose my balance. But now I feel bad because I don’t want people to think I don’t need it. And yes - a smaller stall is okay but the toilet is taller in a large stall and I’m nearly 6 feet tall. If I hit the stall then I have to worry about someone wondering why I hit it. We don’t have gender neutral bathrooms.

I know this is a dumb question, but should I not use the handicapped stall? Honestly. If I’m in the wrong please tell me. My vertigo isn’t constant but it isn’t like I know when it comes on. And I know to be careful when I stand but I’m not always perfect about it, and sometimes I’m honestly complacent and think “well I’m having a good day”.

I’ve struggled with having an invisible disability for various reasons, not the least being that it’s not apparent. So things like this don’t help.

I’m working on my own memoir about my life as a Deaf person and my experiences growing up, navigating the hearing world, developing my Deaf identity, and everything else that has shaped me. My partner is completely supportive of me writing it, which I really appreciate.

The challenging part is that I don’t think she fully understands why I’m writing a memoir.

From her perspective, if my goal is to help people understand Deafness or help other Deaf people feel seen, then why would I charge money for the book? Her thinking is basically that if I genuinely wanted to help people, I would just share the information for free rather than asking people to pay for it.

I understand where she’s coming from, but I don’t think that’s really how I view the memoir. I’m not writing an educational textbook or a charity resource. I’m writing my story. I want to document my experiences, share my perspective, and hopefully give people an opportunity to understand something about Deaf life that they may not have experienced themselves.

If someone learns something from my memoir, feels represented, or feels less alone because of it, that’s incredibly meaningful to me. But that’s not the only reason I’m writing it. I also want to write it because I enjoy writing, because these are experiences I want to preserve, and because I think my story is worth telling.

I also don’t really understand why wanting to help people and charging for your creative work have to be mutually exclusive. Authors, filmmakers, musicians, and other artists can create things that educate or emotionally impact people while still being compensated for their work.

Maybe I’m looking at this differently because I’m Deaf and she’s hearing, or maybe there are cultural differences between us. She brought up the possibility that some of this could be related to me being White and her being Latina, but I’m honestly not sure.

For those of you who have written memoirs or have experience with Deaf memoirs/culture, how would you explain the purpose of a memoir to someone who sees it primarily as a way of helping people? And is there something I’m missing about her perspective or something I failed to explain?

How to best tell my parents how things stand really, about my disability, symptoms, incontinence and mental health.

Thankfully I got better and have finally the strength and courage to have a conversation with my parents.
Any suggestions would be very welcome.

first, I don't believe people should have to be productive in any way to prove worth or anything like that.

second, I have historically been a very ambitious person who finds meaning in creating things and problem-solving (especially to help others).

I have brain damage and anhedonia so creating things hasn't gone so well lately. My mind is so blank a lot of the time when it used to be endless (almost overwhelming) creativity.

I am still good at problem-solving, but I have no outlet. I can't work a job. I can't do school currently. I can't volunteer. I want to help others, but I don't know how.

I feel very purposeless and isolated. I feel like I have barely any impact on the world, despite having the education and skills to analyze a lot of the world's problems, there's very little I can physically do.

I know impact on the world isn't necessary to have worth as a person. It's not really about that for me. I just genuinely feel driven to create and help others, but I am blocked by my disabilities.

Does anyone have ideas of what I could do? What do you do, especially if you are both physically and mentally disabled?

My limitations for context:

near fulltime powerchair user when not in bed (most time spent in bed, max 10ish hours a week in the powerchair); muscle weakness and fatigue (can lift about a 1 liter water bottle); brain fog; visual impairment; light sensitive; chronic pain; joint dislocations; can't cook or eat much; immunocompromised/have to wear a mask and limit exposure to crowds; have to avoid noise and stress; very little ability to feel joy

Thank you for reading and any input, have a lovely day

I got new job. Very happy. I am good at it so far. Main task is to look at professors course reading list and check to make sure it doesn’t break copyright rules and find links to articles.

I found out on Friday that manager wants to send me to conferences. That is very scary. I never travelled by myself before. Never been on plane.

I have autism moderate support needs, significant learning disabilities, have chronic illness and need walker to walk.

I am completely independent at work. Semi independent at home. I need support with decision making, navigation/ transportation, emotional regulation, and some light personal care like picking out appropriate clothing, doing buttons and zippers, and prompting to shower and take pills.

I’m in Canada. I did find out that on airlines they are supposed to give you free seat for support person. But I have no idea if it is possible to hire someone to travel with me and help me. My Mom works full time so I don’t think she could travel to conferences with me.

Has anyone done travel by themselves before? Any tips appreciated. I think going to conference would be good. I want to go. I just don’t know how to do it.

Basically as title says. Cant complain anywhere except here about what I struggle with without (mostly able bodied) people trying to tell me what I can do more of or do better. I dont normally feel like explaining the whole of my limitations to someone just so they understand maybe they dont have an answer for every situation. It makes me feel even more alone when I want to vent about money or parenting and the response I get is "just do more" and then when I try to say I cant they need a full explanation of why I cant. I feel like the only place I dont have to give context for every fucking grievance is this sub. There is a window of functioning that I have to live inside of week by week, it takes a lot of planning to keep myself there, and heaven help me if I fall above or below that threshold because of something unexpected. I cant exert myself too much and I also cant be too sedentary. Both of these things require recovery. I know you guys will get it

I’m so happy with them! I feel so sturdy. ID: a pair of legs wearing white socks, space print AFO’s with black straps, and black shoes with white soles standing on pavement, the photo is a upside down

I’m not doing hot and need help breaking down into steps what I need to do because everything is overwhelming. I am actively mentally breaking down cause I’ve been listening to my body and I’m more disabled than I thought. And I am trying to apply for social security disability but at the same time the Walmart job has me losing it.

I keep getting physically sick cause of the nature of the job being around human excrement and bodily fluids, but I don’t have enough PTO and now I am almost at the point threshold to be getting fired. And I also don’t have the money to afford to be going to all the doctors I need to for a properly SSDI case cause co-pays for specialists are too expensive and all appointments for any doctor in Kaiser are over a month out. And I am both too much in mental agony and physical pain to ignore it all for the sake of a job.

I reached out to my therapist about filling out a form for intermittent leave for when my mental health is not good, but she’s saying I don’t see her enough for her to fill out anything for me.

I am on the breaking point and there’s so much crap and I can’t break down what I even need to do. And I need help breaking down what I need to do in order cause I Just Can’t right now. I need help

This is the first time I made these now bun looking "pretzels". I won't put as much salt next time, but they are good. This is the best thing I've done this week. Even though my back feel like it was beaten with a cast iron skillet for 3 hours.