Funny you should ask because I was just talking with my sibling’s new partner and she’s very aware of disability. We haven’t talked a lot yet but pretty much get each other on this bc she’s disabled too lol. She asked if I had gotten checked out for autism and I said no, and she said “because with us (she’s diagnosed) there’s often these comorbidities that we can’t explain esp with stomach problems”.

To be clear I’ve never had a diagnosis but as a teen I’ve often wondered if I might have been autistic. Even now I sometimes still wonder. At my age though most of the problems I noticed as a teen about my conduct/behavior seem to have gotten much better, especially after I started lifting weights some 4 years ago (and had to stop bc of the disability of course 🥲).

Like I was anxious a lot, in my own world a lot of the time, not really caring to understand that I lived in the external world - so didn’t really care how I looked or dressed. Lots of social etiquette and situations that I simply did not get, but to be fair we moved a lot across the world when I was young so I think some of it can be attributed to never really having a stable environment to learn in. Like the way they do things in one place (e.g. riding the bus or paying at stores) is completely different in another country. It kinda fucks with you and people think you’re mentally challenged (sorry if it’s not the correct term it’s very late here lol) when you don’t know this as an adult but what do you want from me, I literally moved here a month ago!

Even to this day I don’t really rely on facial expressions talking to people because I don’t really understand them. I still catch myself talking to people while looking elsewhere because I have no idea how to interpret most facial expressions so I rely on their words and tones instead. This part was tested, but idk I don’t think they really cared to interpret the results. It’s a test where they show you photos taken of people miming emotions on their faces and you have to match the 6 emotions to the pictures. I think I failed miserably lol it took me a good while for each picture and I failed 2 in the end IIRC.

I used to have a vivid imagination as a kid, I couldn’t fall asleep easily at bedtime (which I think was because of DSPS, delayed sleep phase syndrome which is a very unknown syndrome to the point that even experts often don’t know about it) so I used to play pretend for hours on end inventing worlds and stories lol.

I’ve heard masking comes naturally with age, I’m not sure if it’s masking or just the external symptoms softening. I don’t have anxiety anymore (I had it all throughout my teens + adult years and never realized what it was until I was in my 20s), and a lot of the time as a teen and young adult people used to think I was being rude in how I said things even when I thought I was talking normally. But I also have a booming voice lol but hey I was born with it can’t really do anything about it. I can go on for hours talking about something without even realizing it.

Anyway I could go on lol. I feel like I could try and get a diagnosis to be sure but I’m also not sure what good it would do. Maybe for my own closure.

Thank you for your kind words 🙌 I’ll try to take it easy until then but it’s not easy with a family that doesn’t really seem to remember that I’m disabled and has never once asked me about what my triggers are or how I manage with them. People incl family just assume what you can and can’t do and what you need or don’t need for you when they could just ask “Do you know your triggers, and how do you usually deal with them?”

The day I dread most is the 26th but it’s at my grandma’s house so I still want to go lol.

Hit by a very debilitating episode since yesterday 😩 I’m not sure if it’s because I stopped the tricyclics or my body just decided it wanted to throw a fit but here it is. Got prescribed stronger antiemetics to try but I haven’t ordered them yet (insurance bullshit) and I could go get them on the 26 when stores open but they will have to order it so I’ll only get it on the 27. I have a family dinner and drive on the 26 lol.

Aside from that I’m just managing one day at a time I guess.

Wish that for you!! I’m not sure if the tricyclics are doing anything, I do seem to have been doing better yesterday and today but sometimes that happens. I’ll wait until I see my dr in 2 weeks and what she thinks.

All the best to you, hope they’ll treat it.

Unemployment claims, immigration, disability pay, hiring are also all made worse by AI.

eeeeeh disability claim is already a nightmare without AI, they never have enough people for the amount of cases with new ones coming in every day. As someone waiting for my disability claim putting AI in the process can’t possibly be worse than what I’m going through already lol. it took them 3 months to send me a first update and it was to ask me some details about my past employment and nothing else. at worst the AI will deny me which a human will also do because they hope you don’t appeal, but i assure you i will appeal any denial lol

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Oh I absolutely wish that for you!!

That’s very interesting, thank you for sharing, I’ll have to look into it.

edit: from my quick googling, a lot of the signs are similar to mine except the part about episodes lasting for a week at most. In my case I’m always in an episode, with varying intensity. The times I’m feeling “mostly okay” are very few and far between and I still usually feel some amount of nausea no matter what.

Especially if your shower is in a bathtub, these things are scary. I have to grab onto the shower handle to get out of it when I’m not feeling okay (which is basically every time I get out of the shower)

Lol the only good thing out of this is it always comes up empty, even if I just ate. Yet even specialists can offer no explanation why that happens. But at least cleaning up only takes a second.

I’m thinking about it too. It can be dangerous also if you get light headed and fall in the shower, especially if you live alone or lock the door. I knew someone who got light headed from the hot water, but you’ve probably tried all sorts of combinations already. I had to learn to take it slower and get done in 5 minutes, I might also start using a timer so I can get out before my body starts acting up.

It was probably no longer than 30 seconds yeah, that’s about the normal time for passing out unlike the movies say. Any more than that and you have bigger problems on your hands!

thanks comrade, now I get to do it again next time they call me for this lol. They’re going to refer my case to their own doctor who may or may not need to evaluate me, and then after that they should accept my own doctors certificates.

I am so thankful to the doctor I went to see when I got my PE that he took it seriously from the getgo and ordered a CT scan. The blood test showed elevated D-dimer and even he explained that it could mean clotting but not necessarily, and that I was too young to get a PE (edit: he said something like this is usually something older people get), but he still ordered the CT scan just in case. How many people die every year because doctors don’t want to investigate? Dealing with them you really start to understand they’re not special people, most of them are bureaucrats who are scared of being investigated.

And she wasn’t even here for treatment or anything, the only reason I went to see her (could have been anyone in the clinic too) was to decide if I could do that thing I was called to or not.

now I’m hungry and it’s not even close to lunch time 😩

still answering questions if you have any!

Oh one thing I can add, look up the reviews for your local disability office on google. They have different names depending, but the place disabled people get their claims assessed. Mine is full of people saying they left crying, from the doctors they had to see there. It’s easy to gather facts from this.

That’s a very good question, and I’m not sure I can answer it by myself. I think this is a space that is ripe for agitation, because disabled people are discriminated against in many ways. For one, states spend more money on auditing claims than on paying them out, which means if we gave everyone full pension no questions asked we’d actually be saving money. Where I live, wheelchair accessibility is absolutely not adequate. You literally can’t access public transport in my town because there’s stairs. Even parents with strollers have trouble with it. It’s been like this for decades.

Most people are understanding to the needs of disabled people too, at least nominally, so part of the work is already done to get the public on board with disability reforms. They don’t like “freeloaders” but they like feeling good about disabled people getting some of the accommodations we need - even if they’re shitty accommodations that we don’t need. But this is where a communist party can come in, and make sure we actually get what we need and ask for, not some half-assed project some politician can pat themselves on the back for because it’s getting close to election time. I would even wager to say a lot of our needs has overlap with the abled population, such as access to public transit, healthcare, and welfare. This benefits everyone, not just the disabled.

People think you’re born with a disability but this is not always true. I don’t know the stats, but my disability started after an unprovoked pulmonary embolism at 30 years old. You can get into a car accident and become disabled. It can happen at any age for any reason.

Having sections about equality between people (usually between genders in my context) and healthcare reform in a party program is not enough - yet this is the best my previous party can offer. We need particular accommodations. A lot of these things have come about under capitalism, which is a missed opportunity for communists to agitate around! I can now get my life-saving medication delivered with just two phone calls - one to my dr to get a refillable prescription, and one to the nearby pharmacy for free delivery. There is even an app now that allows me to click a button to get my medication, after a scheduled call with one of their doctors. I haven’t tried it yet but I think I’m going to do that next, because on bad days I literally can’t dress up and go outside, and you never know when you have a bad day (and for how long), so I could actually run out of medication without any way to get more by myself if there was no delivery. Even making phone calls on some days is impossible.

On that I would also add, technology sovereignty is a big point that parties need to look at too. It ties in with disability but it’s not particular to disability. This app is owned by huge health companies and insurers, not doctors or the public. I’m pretty sure they sell your data and even if they don’t, the particular insurers, that you may not be a customer with, now have access to your medical data.

The party I used to organize with for example has a section about digital tech in its program, but it’s actually anti-disabled. They want to limit digital tech in classrooms (kids can be disabled too, but they make no mention of special cases and explicitly say they want to limit it as much as possible). They also want to limit digital ‘overconsumption’ for ecological reasons. what does that even mean you know? I literally need these tools to help me go about my day (e.g. being able to fill in forms online. I need someone to send my monthly claim form by mail because the most I can do is put the paper in the envelope, I can’t take it outside on most days). This is something a disabled person could have advised them on, which probably did not happen when they wrote this program.

So to me it would make sense for parties to include an actual, serious section about disability rights and issues in their programs. This requires disabled people to be represented in the party, of course, and:

1. allowed their accommodations so they can speak and participate equally,
2. to actually be listened to.

Where it gets challenging is we are often unable to show up in person and can’t provide as much effort to the party, of course. It’s very individualized because for example, personally I can write for hours. My mental energy is not exhausted by my disability. But I can’t go very far outside, or drive myself very far. Other disabled people may be able to go out, just needing more time to get there. And other disabled people may simply get exhausted from any mental effort and can only provide 30 minutes of effort at a time. It’s very dependent, and I think this is why it’s important to have large disabled representation in a party.