Disability Eligible? Fibro, Anxiety, Depression, ADD & ASD

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My husband, Lytenian, has only had work for one year of our eleven years of marriage. He’s 39 years old, and he’s only worked about 8 years in his life. He only was able to acquire jobs when they were handed to him. When he was around 30 he made a real effort to get a job, but he would freeze up with terrible anxiety and be unable to get an application. One time he managed to bring an application home, but he couldn’t make himself fill it out.

Even when it comes to things he wants to do, he rarely reaches his goals – even when the task is relatively small. He has really wanted to plant kiwi vines for years. I gave him the space, the tools, and even helped with the labor, but in five summers all he’s got is a hole in the ground.

He can manage small responsibilities if that’s all he has to do. In his current, unemployed, chronic-pain/depression state he’s able to do laundry, take out the compost, fix any computer issues in the household, occasionally shop for and build a new computer, mow the lawn, and cook some meals. He can almost-sortof-barely keep up with his own dirty dishes. He can’t keep his bedroom clean, although he does manage to keep the bathtub clean.

He spends two hours on hygiene every day and it takes all his energy. It takes him three hours after getting up to be ready to perform any task besides self-care. He’s exhausted by this three-hour process and often goes back to bed afterward. He sleeps ten to twenty hours a day.

He’s in chronic pain. He has not been diagnosed with fibromyalgia, but I’m confident we could get him diagnosed with that easily, since it is very obviously the matching diagnoses for his constant inflammatory pain.

Wearing a mask gives him a panic attack so he’s barely been able to leave the house since the pandemic started. Every time we’re in a grocery store together, I have to stop to hug him and comfort him and remind him to breathe slowly. Usually he has to leave the grocery store to go breathe outside without the mask, often not returning to the store. The panic attacks make the inflammation worse for days, sometimes weeks, and his knee pain has become so bad that he’s walked with a limp for the past year.

He’s had tendonitis in his hands since I met him in 2009. He’d already had the condition for even longer, since he was around eighteen. He’s done plenty of research and various modalities and therapies for it. He spends any money he manages to get (Christmas money from his parents) on various ergonomic tools that are supposed to help. He literally has dozens of special tools for his condition, and they all help a little but nothing helps enough. He uses a massage pillow daily and does a long series of stretches (to the extent that he actually does anything as regularly as daily.)

I imagine that weekly sessions to a chiropractor combined with weekly sessions with a Completion Process practitioner might be able to heal him, but we can’t afford either. He has no income besides what his parents send him for Christmas, and that’s his spending allowance for the year. I pay for his food and housing of course, but I can’t afford the extra treatments he needs. One year I asked my family to all contribute to a fund for him to get him six months of chiropractic. That definitely, definitely helped with his chronic pain, but there was just no way to keep it up, and about three months after stopping he was mostly regressed to where he was before starting. And now, around two years later, he’s at the worst I’ve ever seen him.

He was diagnosed with ADD as a child. He can’t focus on most things for very long without becoming so anxious that he twitches and shakes constantly. We can’t sleep in the same bed because of how much he twitches and how it vibrates the whole bed. This has become much worse in the past year and I worry that he’s developed tics that may never go away. He requires a variety of tasks and the ability to switch between them freely.

He also really does need ten or more hours of sleep every night. He’s tried polyphasic sleeping and other methods to reduce his sleep requirements (including various special supplements), but nothing substitutes for sleep. He has terrible bags under his eyes and moves and acts like a zombie on eight hours of sleep. His average hours of sleep per night is probably about thirteen, maybe fourteen.

He can’t maintain a schedule. When he did have a job he was always late, sometimes by as much as two hours. He can’t estimate how much time anything will take him. He’s usually off by a factor of three, but sometimes much more. He can’t estimate what he can realistically accomplish. I think he finds it too discouraging to face his track record, so he estimates (perhaps) based on what he might have been able to do at sixteen, or something like that. Whatever the case is, he is always trying to volunteer for something for which I know he won’t do, which puts me in the terrible position of waiting for days, weeks, months or years and then finally doing it myself when I can’t wait anymore.

He’s extremely exhausted by social interactions – even implied ones. He can have a panic attack in response to being asked a question. The effort required for him to fully mask (meaning: to pretend to be a normal person) for a couple hours leaves him in bed for as much as three days afterward. I usually speak for him in difficult situations. He has trouble speaking when he feels stressed or afraid, often going completely nonverbal even once we’re alone and it’s just the two of us – and he trusts me above anyone else.

He can’t make friends. He had no deep friendships when I met him and he still doesn’t. There is nobody who calls him ‘just to catch up,’ or say hello. While he has people online he calls ‘friends’ none of them last and he doesn’t know how to make it last. Nobody comes over to visit him. He doesn’t go out with anybody. He only meets people in video games and when I introduce him to people in person. Any friends he makes are actually my friends and only his friends by extension. He could make them into his friends too, but he doesn’t know how – despite years of opportunity and discussion. (Ironically, he was the one who taught me how to mask well enough to make friends. I didn’t have any before I met Lytenian when I was twenty.)

He can’t even maintain a relationship with his parents or siblings, despite his family being otherwise close. He only ever calls his parents when I practically drag him into it. Most of the time when his mother sends me a text message to ask if we’re available I have to say no because he is sleeping. Sometimes he sleeps so much for so many days that I go to check and be sure he is still breathing. He can sleep for three days only rising long enough to shower, make a smoothie, and go back to sleep. He does this three-days-of-sleep as often as once a month.

It is very, very obvious to me that he is disabled. I used to think that his conditions would improve in time, but his symptoms have become worse. I’m very worried about what’s to become of him in his forties if he can’t get funding for treatment.

I cry for him several times a week. I feel like a failure as a wife, as a friend, as a partner, as a human. I have autism too and even looking into what it takes to get disability allowance starts to give me a panic attack. My limitations are less severe than his, and I’ve managed to make money as a self-employed individual since I was in my late teens. I knew I could never work a ‘regular job’ and so I found other ways to put my unusual talents to use. But I can’t push myself to make the extra money he needs, and I feel very trapped.

We don’t have health insurance. Because I’m self-employed, I’ve never had employer-provided benefits. Besides, western medicine did me so much wrong as a child that I haven’t seen a doctor since I was sixteen. And I’ve been a hell of a lot healthier in the more recent sixteen years of my life than I was for the first sixteen years, but that’s another story which I could post to another thread if people are curious.

Anything that is part of “the system” is hard on both of us. Lytenian and I have a huge ordeal when we fly. His parents occasionally pay for us to take a flight to visit them on the other end of the country. We’re an emotional mess when it comes to security, always afraid they’re going to take away one of the many things we desperately need in order to not be in terrible pain for the whole flight (like fresh ginger root). He does his sleep-for-three-days thing after we land, and I’m not much better!

I’m overwhelmed (to the point of severe meltdown) by taxes to the point where I’ve made an arrangement specifically so as to never deal with taxes again in my life (someone else does them for me without my having to pay for the service). I am intimidated by the faulty, domineering medical system. I do everything I can to avoid anything related to government, bureaucracy, politics, etc. I vote and do my best to make good political choices when it comes to how I spend my money and live my life, but to actually get involved in anything involving going to official buildings . . . and speaking to officials . . . is scary. I can probably manage it for Lytenian’s sake, but if we’re met with a lot of resistance, I know I will meltdown. I need to be prepared.

In other words, I’m the person who has to get him help, and I need help getting him help!

Please help!! !

PS: Neither of us are diagnosed as autistic. It’s very obvious to all of us now, including his parents and mine and everyone we know, including friends who are diagnosed as autistic. He has been previously diagnosed with ADD and depression, both when he was a minor and living with his parents. I’m aware the first step may be getting some of these diagnoses, but I worry that the cost of getting several diagnoses is going to be steep, and that the eventual benefits he may be eligible for will not even cover the costs involved in getting the benefits in the first place. I have no idea how much people even receive if they do successfully make a case.

We live in Ithaca, New York State, USA.

Where do I start? What can I expect?

I think that you should find a specialist to diagnose both of you with ASD. This will help with filing for disability. ADHD and ADD alone usually don't get someone SSDI, but autism and chronic depression usually do. Autism is considered more severe a condition and is associated in the public mind with intellectual disability. A diagnosis from a specialist would definitely help, so would a diagnosis of depression.

A good disability lawyer is usually necessary. Social security usually refuses people the first time they file. I suggest getting a lawyer and prepare to present evidence of disability before a judge in a small courtroom. Prepare to wear an uncomfortable suit, or whatever the court requires as dress code.

Also get diagnoses of the physical problems and concrete documentation how they interfere with self-care and employability.

also, see https://www.ssa.gov/benefits/disability/qualify.html
NOTE: Social Security's web page with paragraph has links within the following text,

I'm sorry to have to say you can expect great stress and an epic challenge - to get SSD you have to play the system's game by the system's rules, in detail, & in the system's eyes you have to play it perfectly.

Ah, just remembered this outfit, while I can't offer specific details about they can do this and do that, I do suggest contacting them and explaining y'all's situation,
https://autisticadvocacy.org/

They will have ideas, at least given what they do, I expect them to,

That makes total sense, and that was my guess as well based on the little reading I've done thus far.



Won't a disability lawyer costs hundreds if not thousands of dollars? Can I really expect a payout at the end to be worth that?

Yes, this is exactly what I'm afraid of. I can probably present in a small claims court and such . . . If someone drives me (which I can arrange), and if I'm not required to do something like speed-read something while others are looking over my shoulder and still comprehend what I read. (Dyslexia has actually helped me become a phenomenal writer and editor, but I really can't read without silence, focus, and double the time most people need.)

Really, I guess my main question is really this: can we expect a worthwhile payout for all this horror?

For example, assume autism diagnosis costs like $400 to acquire. And then perhaps the fibromyalgia and depression documentation requires another $150. And then hiring a lawyer costs like $2,000. (I'm guessing here, and I don't have much experience with these kinds of costs.) So if we put $2,550 into it, and at the end Lytenian is entitled to $100 a month for a year, and then we have to file again and the process costs another $300 to re-file for some reason . . . Then the whole thing would have cost money, stress, time, and undoubtedly made his symptoms much worse (and mine, for that matter), for absolutely no gain (unless you count more hatred for the system).

So yeah, I guess I expect it to be a nightmare. But I don't know if it is a worthwhile nightmare.

So, on the flipside, if the whole process cost like $1,000, and then he was entitled to getting $500 a month for a year, the stress, time, and pain involved would be worthwhile.

SSD payments are based on what you earned while working.
Using me as an example, my health has always been a bit iffy and therefore I have never been able to work a middle class job.
The current amount of disability payment is larger than the beginning amount as the amount followed my wage history from lower to higher, but it is still just a bit below the amount which the Department of Health and Human Services says is poverty level income for a household of 1.



Looking at what Social Security says is required in work history for disability, quoted in a post above, but here is the reference again, https://www.ssa.gov/benefits/disability/qualify.html Lytenian has not had enough work history to qualify for Social Security Disability Income, EDIT: the I word they use here is Insurance, SSDI,
therefore the thing to do is look at SSI, which is Supplemental Security Income, he has a better chance of qualifying for that, https://www.ssa.gov/ssi/text-eligibility-ussi.htm



So I'm recommending going for SSI instead of Disability.
The SSI payments run lower than Disability payments but even so, the amount is a whole lot better than getting paid zero.

Last edited by kitesandtrainsandcats on 29 Mar 2021, 1:27 pm, edited 1 time in total.

My daughter is diagnosed with ASD, Fibro, Anxiety Disorders including PTSD, and some depression. I'm almost certain she also has ADHD but she hasn't been formally identified. She's diagnosed with Epilepsy, and with Lupus Nephritis, which is a chronic autoimmune disease classified as permanent disability, because it can't be cured. Her skin, joints, and kidneys are damaged by her overactive immune system. She has hundreds of pages of medical records and reports to support her claim. Regardless it took her two years and a full government tribunal just to get benefits enough for pocket money. She doesn't get enough to be self-sufficient and I don't anticipate she'll ever move out. It's enough that she doesn't need to work, but she does publish novels and generate a little bit of income in that way.

Her work accommodations stated she could only work two days a week, with a maximum of four hours per day including a 30-60 minute break in the middle of the day. She was allowed to miss work short-notice if she had a seizure or a Lupus flare, or if she hadn't slept because of Fibro. She also needed environmental accommodations like special lighting, fragrance-free, noise-cancelling headphones, no use of telephones, etc. She couldn't be on her feet more than 15 minutes at a time and couldn't lift things. None of her employers were able to meet these accommodations. She's OK on the disability money but I end up paying a lot of her expenses myself.

That is pretty cool.

I just found Social Security's own sort-of answer to that question, https://www.ssa.gov/disabilityfacts/facts.html

Ohhh. Wow. I didn't even know there were separate terms. This is a very valuable distinction and will help me bark up the right tree!

Wow. It sounds like your daughter's case is somewhat more severe than Lytenian's, and still . . . Two years . . . For pocket money? Whew. What a nightmare. I am so sorry that you/she weren't able to get more than this.

If I may ask, what has your daughter found most effective for her in terms of lifestyle choices and treatments? (Feel free to refer me to another post of yours somewhere; I notice you're a very accomplished author of these forums!)

Wow, thank you so much for looking into this for me! Lytenian and I talked about this today, and we concluded if we could expect something in the area of $1,000 per month, we'd go for it. That would make it worthwhile. That would be the difference we need to enable him to get chiropractic and other treatments and supplements and all the further ergonomic support systems he wants to try out.

I think they would have paid her more if she moved out and had her own place, but she'd be below the poverty line and she isn't self-sufficient enough to live on her own. She opted to take less money and stay at home where she has a lot of privacy and independence, but I'm always here for her.

I'm not sure what you mean by lifestyle choices and treatments? She did attend tertiary education for two professional careers, but couldn't finish either because of her Lupus in particular. The physical demands were too great even with accommodations. Now she's home writing and decorating and resting, after a severe autistic burnout at the end of her five-year relationship. Treatments? Beyond the medical doctors and specialists she sees an ASD psychotherapist, a naturopath, a chiropractor, an osteopath, and she gets regular massage therapy for her sore joints (Lupus). She takes about 12 types of medicine a day (some of them are 2-3 times per day = about 25 pills daily?) She is ill and doesn't have energy for much outside the house but we've been on lockdown for a year anyway. She used to be on WP years ago.

That makes perfect sense! Lytenian (and I, for that matter), would choose the same in her shoes I'm sure.





Ah, alright. I was wondering if you'd gone through the whole gamut of alternative therapies we've tried. We've done an exclusively raw vegan diet, yoga, free-form dance, chiropractic, dozens of various supplements over the years, lymphatic massage, essential oils, etc, etc.

For him, one of the most effective "treatments" was the dance, although we honestly weren't thinking of it as treatment at the time but we noticed marked improvements in a lot of his symptoms (including his social skills), but the pandemic killed that.

The chiropractic and lymphatic massage were both very helpful, but too expensive for us to keep doing.

The raw vegan diet was extremely helpful to us both for a while, but we eventually realized the magic was in the high level of antioxidants, not in eating exclusively raw foods. (I fancied myself a raw food guru a decade ago and used to teach about it; my own results from the diet were much more dramatic than his.)

While I mostly just enjoy the smell of essential oils and find tea tree helpful for my skin, he has found peppermint and blue tansy to help reduce his inflammatory pain in his joints and muscles by 20% to 60%, depending on the day.

He's found supplementation with B12 to be critical to his wellbeing. For me, I've found K2 and spirulina to help many of my chronic problems go away (dental sensitivity and cankersores were a lifelong, chronic issue for me since I was a baby until I discovered these helpers).

But, as I said, in his case, all of this stuff makes him more comfortable, less pained, more happy with his life, but doesn't allow him to accomplish any of his bigger dreams. He used to talk about being a carpenter and wanting to learn how to design custom windows and doors and furniture.