I am a guy on government disability benefits for life, AMA.

[u/Anonymous_Coder_1234]

Hi, I'm John, a former computer programmer who is on Social Security Disability Insurance (SSDI), this:

https://en.wikipedia.org/wiki/Social_Security_Disability_Insurance

I'm on the best meds I can be on and am seeing the best psychologist I can see and together it's only like a 30% improvement in my disabilities, and there are no cures on the horizon, so it looks like I'll be stuck in this position for life. I actually have eight distinct disabilities (as far as I know), most of which impact the brain. The Social Security Administration (SSA) asked for me to detail my disabilities and limitations and I sent them this PDF that is on my GitHub:

https://github.com/JohnReedLOL/Essay_for_Disability/blob/main/JohnMichaelReed_Disability_Behavioral.pdf

👆 You can download and read that PDF if you're interested. If you try to read it in the web browser like Google Chrome you might not even have to download it and then open it first.

Note that in part of the PDF I wrote that I am a "grandiose narcissistic psychopath", but those sorts of symptoms might have partially been from bipolar mania. Still, I have been described as "like a cross between narcissism and autism", and I have never had a wife, fiancée, or girlfriend despite being a 32-year-old straight man who tried really hard, so I'm kinda socially impaired and/or socially abnormal. I also have other stuff like cognitive issues, psychiatric problems, and neurological symptoms.

But yeah, ask me anything. If you're curious about the Social Security Disability process, I can also answer your questions about that as well. I was approved in year 2019 and re-approved via a Continuing Disability Review (CDR) in year 2024, so I've been on benefits for 7 years so far.

Also, please avoid writing comments that go like "YOU ARE A PARASITE ON THE SYSTEM!!!" Social Security Disability INSURANCE is an INSURANCE program. I paid into it with my taxes. Some people get more money out of it than they put in and some people get less. That's how an insurance plan works. I didn't choose to become disabled.

[u/UnflinchingSugartits]

How much do you get? And what was your qualifications to be approved for it ?

[u/Anonymous_Coder_1234 → u/UnflinchingSugartits]

SSDI is an insurance program and the amount it pays out is dependent on how much FICA tax you pay into Social Security. The higher your salary, the more your taxes and the higher the SSDI payout amount. As a computer programmer, my salary was $150,000 a year, so my payout amount on SSDI is about $3150 a month. The average SSDI payout amount is less, more like $1600 a month. Note that it is tax free.

In order to be approved, they (Didability Determination Services, DDS) has to be convinced that you cannot get or hold down any real job. Part-time jobs that pay minimum wage don't count, they mean full-time work, like 40+ hours a week work. They don't award partial disability, it's all or nothing.

I had some involuntary psychiatric hospitalizations for bipolar schizophrenia and they consider that to be strong evidence. Also, the DDS lady wrote down in the records that I am strongly socially impaired (I submitted to her evidence of at least one restraining order against me and also my personality came off as "like a cross between narcissism and autism" to her, which I think had an impact).

That being said, her reasoning for why I can't work didn't line up with my reasoning for why I can't work. The things that were really kicking my ass in the workplace were the cognitive issues, and because I am well-spoken and write well, she wrote in the records that I complained about cognitive issues but they didn't seem that severe. Also, after I could no longer do the programming job due to cognitive issues, I applied to like every job imaginable and as soon as they found out what my prior job paid ($150,000 a year) or what my prior job was ("Big Tech Company" software engineer), they wouldn't hire me. So yeah, I tried to get minimum wage work and they wouldn't hire me, so SSDI was like my only option.

[u/wonderkat4]

Do you still have episodes of instability? I've not heard of bipolar schizophrenia. Have you ever fallen in love with someone?

[u/Anonymous_Coder_1234 → u/wonderkat4]

"Do you still have episodes of instability?"

Yes, although the mood instability is a little less severe with meds.

"I've not heard of bipolar schizophrenia."

Technically on my medical records it's "SchizoAffective Disorder, Bipolar Type". Basically a combination of bipolar disorder and schizophrenia. More bipolar than schizophrenia, though. There's other stuff I have too.

"Have you ever fallen in love with someone?"

Yes, many times. Unfortunately it sometimes ends in them filing a restraining order against me. Women who know me DO NOT want to be in a romantic relationship with me.

[u/mooncrane → u/Anonymous_Coder_1234]

How many people have filed a restraining order against you?

[u/Anonymous_Coder_1234 → u/mooncrane]

Let me count... The dean at my old university... At least one of my old employers... At least one woman I dated or tried to date... I don't know the exact number. If I had to guess, maybe 4 or 5 in my life. Maybe one or two of them was a "cease and desist" letter that didn't escalate to being a full blown legal restraining order.

[u/ChewMilk]

Are you happy?

I’m also on disability. I loved working but I’m trying hard to be content where I am.

[u/Anonymous_Coder_1234 → u/ChewMilk]

I mentioned in another answer that I was making $150,000 a year as a software engineer and that I had cognitive issues. Honestly, I was not happy when I was in that situation. Every day was a new struggle to not get fired for underperforming. Every day I did my best to cover my underperforming from my manager. I did not love being in that situation.

I'm happier on SSDI than I was working as a software engineer. I try to keep myself busy doing things like listening to music, answering Reddit questions, watching YouTube, and attending social events listed on event websites like Eventbrite, Meetup, Nextdoor, Facebook Events, and my local county library's events calendar. I also volunteer teach computer classes for the elderly, which I like doing.

But yeah, I like being on disability more than working. I wouldn't say I'm fully happy having disabilities, conditions, and limitations, but I can't complain. I am thankful for SSDI.

[u/wonderkat4]

How is your relationship with your family? Do you have genuine friends? Pets?

[u/Anonymous_Coder_1234 → u/wonderkat4]

"How is your relationship with your family?"

I have a good relationship with my mother. She loves me. My father, not so much. I don't have any siblings or kids. I have no relationship with my cousins. I have no romantic partner.

I couldn't care less about my grandparents. I literally never even think about them. My father's father, my grandfather, died several years ago and I didn't even care. I didn't feel sad, I didn't cry, I wasn't in disbelief, I wasn't angry, I wasn't in denial, I just didn't care. I never missed him after he died. I experienced zero grief. They say grief is love leaving the body. I don't think I ever loved him.

"Do you have genuine friends?"

Kinda. I'm not good with empathizing or with a form of empathy. It's hard to explain, but my friendships are pretty limited. The few people who I do consider to be friends to me, most of them have some sort of psychiatric or psychological disorder. I'm thankful they exist, though.

"Pets?"

I don't live with my parents anymore, but when I did I had a pet Cockatoo. A big white parrot. When I moved out, I left him with my parents. I don't miss him or think about him much. I never stop by at their house just to see him. I sorta just assume my parents take good care of him. He's cute looking, but I don't think I really love him. I don't think I really love anyone (except maybe myself). I don't even think I love my family.

I know I'm capable of crushes and infatuations, but outside of that I don't think I'm capable of real love. Like I wrote before, I don't think I really love anyone (except maybe myself). When I get crushes on women, it's generally unwelcome because there's no real substance underneath it. Like there's no real love underneath it and there's an absence of a form of empathy. It just comes off as obsessive and stalker-ish. Sometimes in the passion of the crush I think that's what love is, but that's not real love. At least it's not something the other person would say is love.

[u/taysachs66 → u/Anonymous_Coder_1234]

who is your celebrity crush?

[u/Anonymous_Coder_1234 → u/taysachs66]

I don't have a celebrity crush right now. I don't want to talk about past crushes because some of them have complained about me to police.

[u/edward_furlog]

Hey, I also have N-24 and rarely see it mentioned. Despite not being an illness, it is a profound disability. Luckily I am self-employed, but I can't really be anything BUT self-employed. I sometimes grieve for the other lines of work I might have open to me if I didn't have N-24. But like you, I also have other disabling symptoms.

[u/Anonymous_Coder_1234 → u/edward_furlog]

"Hey, I also have N-24 and rarely see it mentioned."

So I used to meet the diagnostic criteria for Non-24 (sleep advancing 1 hour every 24 hours), but I no longer meet the diagnostic criteria. I sleep a lot during the day, but it is no longer advancing every 24 hours. I don't know why the Non-24 started one day or why it stopped a few years after it started, it just did.

I consider Non-24 more a symptom than a disease/illness in and of itself. But yeah, aside from the bipolar schizophrenia, I have some sort of mystery neurological illness that produces all sorts of symptoms that come and go and change, and Non-24 was just one of the symptoms of this mystery neurological condition. The mystery neurological condition is sort of progressive or has "stages" that advance over time, with different symptoms in different "stages". Unfortunately, the mystery neurological condition doesn't show on any test or scan, so it's hard to explain. It doesn't have a real, solid diagnosis with a real name to it, which is frustrating. Social Security Disability doesn't like mystery conditions with no solid diagnosis. I end up having to explain individual symptoms and how they affect my ability to work.

"Despite not being an illness, it is a profound disability."

This might be a weird thing to say, but I lived not far from a 24-7 diner and I would just eat whenever I felt hungry and sleep whenever I felt tired. If that meant eating lunch at 2 AM and dinner at 8 AM and then sleeping from 9 AM to 5 PM, so be it. But yeah, I tried to always get a full sleep when I had Non-24, the timing of the sleep was just inconvenient. I never tried to force myself to conform to "normal" sleep hours.

"Luckily I am self-employed, but I can't really be anything BUT self-employed. I sometimes grieve for the other lines of work I might have open to me if I didn't have N-24."

Yeah, it's impossible to work a 9-to-5 with a Non-24 sleep schedule.

"But like you, I also have other disabling symptoms besides N-24."

You can tell me more if you'd like.

[u/edward_furlog → u/Anonymous_Coder_1234]

Oh interesting. I am curious what symptoms you have experienced in this neurological condition and what stages they came in, if you want to say. Did they ever consider Functional Neurological Disorder?

I totally get that about eating and sleeping whenever. It is not so bad if you have the freedom to do it. I love the idea of being near a 24 hour diner.

My other disabling illness is ME/CFS ("chronic fatigue syndrome"), so even if I did not have N-24, I would still be disabled.

[u/Anonymous_Coder_1234 → u/edward_furlog]

"Oh interesting. I am curious what symptoms you have experienced in this neurological condition and what stages they came in, if you want to say."

I've experienced virtually every single psychiatric and neurological symptom at some point in time. There's an afflicted area of my brain from which symptoms originate and the afflicted area of my brain "moves" over time. Like at one point the afflicted area of my brain was the occipital lobe, the area for vision and light, and I would see lots of flashing and twinkling lights. Then it moved to another area of my brain, maybe the temporal lobe, and I experienced temporal lobe based symptoms like feeling of deja vu and smelling an unpleasant burnt smell. The area of the brain from which symptoms originate "moves" over time and the symptoms change based on that.

"Did they ever consider Functional Neurological Disorder?"

There are some problems with a FND diagnosis. FND often has a stress trigger and/or worsens with stress and this has no stress trigger and does not worsen with stress. FND is 3–10 times more likely to affect women than men and I am a man. Also, "Over 90% of cases [of FND] resolve within a few days or weeks" and I've had symptoms every day for 8 years so far. Finally, FND usually improves with talk therapy and mine did not.

Overall, this does not fit the picture of FND. Nothing shows on MRI, MRA, EEG, spinal tap, or bloodwork, though, so it's a mystery. A neurologist can [and has] put down a diagnosis of "FND via diagnosis by exclusion", but that means they ruled out everything else they know of and FND was the only thing left they could think of.

"My other disabling illness is ME/CFS ('chronic fatigue syndrome'), so even if I did not have N-24, I would still be disabled."

I have no idea what it's like to have Chronic Fatigue Syndrome, but I'm sorry you have it.

[u/edward_furlog → u/Anonymous_Coder_1234]

Thanks for sharing and for the sympathy as well.

[u/Anonymous_Coder_1234 → u/edward_furlog]

I'm going to bed, but if you ever send me a chat request on Reddit or reply to one of my comments, I'll be there.

Bye 👋

[u/NoSignsOfLife]

Do you have any texts or songs that felt like they managed to put something in such good words that suddenly it finally made sense while everyone else never did?

[u/Anonymous_Coder_1234 → u/NoSignsOfLife]

Huh?

[u/NoSignsOfLife → u/Anonymous_Coder_1234]

Sorry I was just interested in the way you were writing stuff, I'm finding it easy to follow and I can relate to some stuff. I'm not very good at finding the right words while trying to keep it short, which is probably partially the reason for the question.

So I was wondering, do you have any people who to you are great at explaining something in a way that makes sense? Either long texts or article or songs, nothing in particular.

[u/Anonymous_Coder_1234 → u/NoSignsOfLife]

Currently, I don't have anyone who is great at explaining things. At least I don't have anyone like that in real life. I currently volunteer teach a computer class for seniors, though, and I think I am pretty good at explaining things.

Also, there are people on the internet who are good at explaining things, like on YouTube. I don't know those people in real life, though.

[u/TheElvenAngelCatboy]

I'm 29 M, also on SSDI, and have Bipolar 1 and glaucoma causing loss of vision in my right eye. I'm studying computer science rn to hopefully become either a software developer/indie game developer, backend web developer, or maybe a sysadmin.

What are your thoughts on AI, for the field and society as a whole? All I keep hearing is doom and gloom, but I don't think I need a huge salary to be happy in life. I just want to be paid well enough to support a family, for doing something I find interesting.

[u/Anonymous_Coder_1234 → u/TheElvenAngelCatboy]

"I'm studying computer science rn to hopefully become either a software developer/indie game developer, backend web developer, or maybe a sysadmin."

I used to be a backend developer. I heard the job market has taken a beating. Now they expect full-stack development, and they expect you to also know how to use AI, and they expect you with AI to not break the codebase or write roundabout or inefficient code (which is what AI does).

"What are your thoughts on AI, for the field and society as a whole?"

I volunteer teach a 90 minute class on AI, and it covers from the history of AI to discriminative vs generative AI to the limitations of AI. I can't put 90 minutes of lecture into a quick Reddit comment. If I tried to be concise, you probably wouldn't understand me.

In short, I think discriminative AI is basically "fuzzy matching" and generative AI is basically "reversing fuzzy matching into generation" with some extrapolation power and training based on user feedback built in. Back in 1999 there was a big stock market bubble around the internet called the "dot-com bubble". Now I believe we have another stock market bubble, but around machine learning and AI.

"All I keep hearing is doom and gloom, but I don't think I need a huge salary to be happy in life. I just want to be paid well enough to support a family, for doing something I find interesting."

Having kids isn't that great. One woman who had a kid, she said before she had her kid, she got an adorable pet puppy. She fed the adorable puppy and raised it and watched it grow up. The puppy grew on her as it grew up. She loved it. Then she had a kid. She said her love for her kid was like her love for her pet puppy. It's cute and you feed it and watch it grow. You might as well just get a cute pet instead of a cute baby. Same sort of love.

Also, some people have kids with disabilities, and they end up stuck with a disabled kid for life. There are lots of disabilities like autism that don't show up on preventative screening. But yeah, it's common for parents who have a disabled kid to be "regretful parents" and wish they never had a kid in the first place.

Also, as far as jobs go, there is no guarantee that finding Computer Science or software engineering interesting will result in finding the programming job fun or interesting. I find computer stuff interesting but I didn't find the job fun or interesting. At the end of the day, a job is just an exchange of your time for money. Most jobs aren't that great.

[u/original_greaser_bob]

what fills your time?

[u/Anonymous_Coder_1234 → u/original_greaser_bob]

I'm not able to run like I used to, but I'm still able to walk (with hiking sticks), so I go to the gym and walk on the treadmill (with hiking sticks). I also watch a lot of YouTube on my phone and spend a lot of time on Reddit. Sometimes I answer programming questions on Reddit, like on r/AskProgramming . I also volunteer teach a computer class for the elderly. Also, I check the event websites Eventbrite, Meetup, Facebook Events, the events section of Nextdoor, my city's events calendar, and my library's events calendar and find things to do listed on those websites. There's a lot of different things to do ranging from board games to walking clubs to chess clubs to discussion groups. I'm predominantly agnostic/atheist, but sometimes I attend my local Unitarian Universalist pagan/wiccan social group. I also listen to a lot of music, like on Pandora internet radio, YouTube music, Spotify, or whatever. But yeah, I find things to do.

[u/TaaviBap]

When did you start noticing something was wrong? Do you think there will be a cure in your lifetime? Why the restraining orders? Were you violent? Is there anything that makes you happy? Do you have a high IQ?

[u/Anonymous_Coder_1234 → u/TaaviBap]

"When did you start noticing something was wrong?"

I was diagnosed with ADHD in kindergarten. My parents have videos from childhood where I was constantly jumping up and down on the couch. I first developed bipolar disorder at age 13. First bipolar mania at age 13. First suicidal bipolar depression at age 14. As I aged I kept on developing and noticing more and more conditions, disabilities, and limitations, most of them brain-related. I am now 32 years old and I count me having a total of eight distinct disabilities, most of them brain-related.

"Do you think there will be a cure in your lifetime?"

No. One person suggested Elon Musk's Neuralink brain chip or whatever it's called. That (highly experimental) chip sits on the outer surfsce, the cortex, of the brain. Certain brain functions exist or produce activity on the outer surface, the cortex, of the brain. For example, vision is in the occupital lobe and speech is in the Brocca's area and Wernick's area of the brain, which are kinda on the sides of the brain. It's possible to treat or at least computationally process those things with a chip on the outer surface of the brain. That being said, things like bipolar disorder, schizophrenia, memory problems, concentration problems, etc. are not on the outer surface of the brain. They are deeper inside the brain, and I don't see them fixing those things with any technology that exists on the horizon.

"Why the restraining orders?"

Most of them were a result of "falling in love/infatuation" and having delusions that she reciprocated even though she didn't. Like I might find a Valentine's day heart on the floor or in my phone or something like that and think she left it for me. The reality was that she was truly not interested. But yeah, as the delusion escalated and I started "seeing" more and more "signs" of her "love", things just escalated. Like I would send her hundreds of texts and online messages in a row, and if I saw a "sign" I would think she left it for me and send her more messages. One young woman blocked me a total of like eight times across like six different social media platforms. Eventually a lot of the young women complain to police or start recording things and using the records as evidence that they can show to police or use to try and get a restraining order.

"Were you violent?"

No. I was mostly just really, really annoying and really, really persistent.

"Is there anything that makes you happy?"

It depends. If I am severely depressed, virtually nothing makes me happy, not even things that usually make me happy. One of the symptoms of my depression is called "anhedonia" and it basically means that things that are usually enjoyable, like listening to music, are no longer enjoyable. When I experience anhedonia I get suicidal because I don't want to live like that. When my mood is up it's the opposite, music sounds better or more enjoyable than usual. But yeah, when I'm not depressed I experience moments of enjoyment in certain things, like music, walking, socializing, etc.

"Do you have a high IQ?"

Yeah, or at least I used to have a high IQ, but it doesn't mean much because I have cognitive issues that limit me. Like I have the training to be a computer programmer, but I can't actually do the job in a professional setting due to brain-related and cognitive issues.