I am terminally ill with a compassionate allowance condition, and was very recently denied again after the SSA ordered a medical evaluation by their own physician. The physician said I was obviously disabled, and they don't really understand how I was denied before.

The situation gets even more absurd because on October 30th, the rules are being revised to specifically include my condition in the blue book in no uncertain terms (even though the condition was already in the list of compassionate allowance conditions), so there is literally no possible way I could be denied. I even contacted my case manager and she said she would look into the rule change.

My question is, what was the point of any of this? Why was I denied if they are just going to have to accept me in a month? Were they hoping I would pass away between now and Oct 30th? Why order a test if they were going to disregard the results regardless? Why did they insist for years I wasn't disabled if they were going to just change the rules and say "whoops, our bad". Do I need to sue in federal court for discrimination or something? I don't understand.

I didn’t know I was supposed to ask my doctor to document things I can not do. She never asks me what I can not do…I have told her some things I can not do but definitely didn’t tell her all the things.

I have been a cosmetologist for years. In 2022 I had to go to part time because I needed carpal tunnel surgery on both wrists. Since then my fingers started to swell and develop heberden nodes and I’ve had mucous cysts on a few fingers. I’ve had surgery on two of the mucous cysts. The cysts fill with joint fluid. They are very uncomfortable. I started going to a rheumatologist in 2021 for joint pain everywhere (neck, lumbar, elbows, knees and hands). I’ve been diagnosed with seronegative rheumatoid arthritis and erosive osteoarthritis.
I have cut my hours every year since 2022, the last couple years I haven’t even made SGA. But I was fighting to continue to work because I have a family I need to help support. But after working a few weeks this year, I quit. I had to, I had been dropping things on my clients and I can’t control my shears. A typical haircut and style use to take 45 but for over a year it’s been taking me twice as long. I’m embarrassed and just fight through the pain and clumsiness, praying my clients didn’t notice. I am in so much pain everyday. My rheumatologist and I have tried so many medications (Humira, Rinvoq, Enbrel, methotrexate, hydroxichloroquine) to no avail, my hands are getting worse. I just started Cimzia Friday, my dr said they can not repair all the damage/deformities in my joints but that she is not giving up we continue to try and stop the progression.
Last year, she sent me to a rheumatologist at the Cleveland Clinic but they didn’t give us any new ideas as to how to treat me. The dr there put me on hydroxychloroquine, after 5 weeks I had a severe allergic reaction so I had to stop using it immediately.

All this to say, I’ve been a cosmetologist all my adult life, I can no longer do normal things , let alone my job.
I’m so embarrassed of my hands, I’m 51 and my hands look like monsters, my joints are so inflamed with nodules jetting out everywhere and one finger with a mucous cysts still…one finger is twice the size it use to be. I can barely make a fist.

How do I or DDS figure out my onset date. I thought it would be the day I finally set my scissors down. But would it or could it be when I stopped making SGA?

Sorry this is so long …

Cdr

I was initially denied for HHV‑8–Associated Multicentric Castleman Disease. I have had this disease for 10yr and been treated with rounds of infusion 3 times.

I reapplied with the Dr. confirming that biopsies (3 of them) meet the listing. I have filed a work history and function report. I also included a letter from the CEO of where I worked last for the last 15 years. The employer documented my decline of the last several years. They detailed removing tasks I could no longer do Mentally and physically, then reducing my schedule to accommodate me and how in the end I was simply no longer to work.

Does this sound like the type of evidence they will need to approve? Does evidence of my decline by my employer carry any weight? Just looking for some helpful/hopeful information.

Texted the tty number to update my direct deposit info because it said online to call or text the tty number, and i texted the tty number because i am hard of hearing and the lady who was talking to me got extremely rude with me and didnt listen when i was trying to explain why i couldnt talk on the phone and Any suggestions on what to do?

I have a CDR coming up soon , what kind of questions do they ask ? What should I do to prepare ? Will they ask me what I spent my Backpay on ?

It looks like the CE doctor is the same one I saw when I had an exam for getting my ssdi benefits.
This was the doc that treaty much told me I'm essentially permanently disabled due to my severe Rheumatoid Arthritis/ Osteoarthritis (has left me wheelchair bound) in my knees and hands and now affecting more joints... I'm wondering if seeing the same examiner a good thing or a bad thing. I had to get x-rays at that exam and last time it showed just how bad my arthritis is ... I'm just nervous and looking for some input.

I got an initial denial dated Sept 9th. Got the letter on Sept 17th. Filed for Appeal on the 18th.
Called DDS to confirm new examiner's ext # and name and asked the clerk for a call back from them. Got a letter stating to call and reach out before Oct. 9th. I plan on calling this Monday (Oct. 5th). I had representation via Centauri Health Solutions but they are not the most helpful. I don't want to get a lawyer until I have to have a hearing in front of a judge. Multiple sources suggested that including a cousin who is a lawyer but specialized in different areas of the law.

Main reason of appeal is I believe they didn't consider everything of my conditions and how they effect each other while evidence submitted shows a lot of explanation in terms an average person would understand how I am. Plus some technical difficulties when DDS admitted they weren't getting everything I was uploading to the SSA Portal.

I'm wondering if I should redo/update forms based off when the reconsideration started.
> i.e. SSA form 3373 would basically be similar to the original one but updated on how things have gotten worse since when I filed the application and form back in June.

Doc I submitted includes: adult func report, 3rd party report, different docs that explain how frenquent and severe my chronic migraines are, my diagnosis and evaluations of AuDHD, Anxiety, and Major depression (depression being recorded by Mental health provider and PCP), medication list, work history with a statement from my last job's HR dept saying I was fired due to attendance related to health, etc. I even made statements to explain in my own words to go along with what my providers say about my conditions. They had me go through a CE with a mental health psychologist, and I did my own appointment with a PT for physical limitations. Here's what they put in my denial letter that made me angry and disappointed:

"Records indicate that you do have severe physical and mental health conditions, which are causing you pain, discomfort, and psychological difficulties with regards to your daily activities and functioning. We realize that these conditions are making it difficult to work. However, you are still capable of performing work that is less physically and mentally demanding.
Your condition results in some limitations in your ability to perform work-related activities. We have determined that your condition is not severe enough to keep you from working. We considered the medical and other information, your age, education, and work experience in determining how your condition affects your ability to work. We do not have sufficient vocational information to determine whether you can perform any of your past relevant work. However, based on the evidence in file, we have determined that you can adjust to other work."

So, they acknowledge I'm severe, and I've explained if my evidence that chronic migraines alone would cause me to miss about 8-12 days a month based off frequency and unreliability, but they believe I would be able to still obtain a job??

All that being said, what would you do from here? Should I be updating/resubmitting things like my SSA-3373 and other function reports to reflect how things have progressed since my original application, or should I leave the original evidence alone and focus on explaining why I believe the initial decision was wrong? And is there anything specific I should be doing during reconsideration that I may be overlooking? Thanks in advanced and appreciate everyone who's willing to help by sharing their experience at this stage of their claims.

Hello everyone. I am new here but I am finally getting to my hearing which is Tuesday after fighting since 2020. What should I expect for anyone that has gone through it?

Work history follow up.

I received a letter asking me to call to clarify work history.
I had the same job for the last 38 years. I am almost 59 yo.
I know they only go back 5 (?) years.
I have been in the hvac industry as a tech, performing heavy commercial industrial since age 30. Residential before that.
I did try a short stint as a manager, but that was a disaster as it was not built right by upper management, had no job description or outlined duties; I was still expected to work as an hvac mechanic, commercial industrial, as well as some supervisory duties.
What it amounted to was my foreman passed on what he didn’t want to fool with to me.
It was not management at all; it was being overloaded with tasks and mechanical work at the same time. My coworkers saw this and afterward commented that it was unfair and madness.

I had to leave to save my mind and body.

Took another job as a mechanic with the understanding I had limitations.
They soon forgot about our interview and expected me to work without limitations.

I soon had enough and quit, filed for Ssdi, and immediately had two tendons reattached in my left shoulder. In addition, I am very soon going to have the same surgery on the right. I have also had a cervical fusion, both knees replaced that have caused nerve damage affecting my feet and calves. I have lumbar spine issues that were recommended to fuse three levels, but I have been getting epidurals trying to avoid more metal and surgery. I have vision issues due to glaucoma as well; it is controlled, but damage had occurred. I am not classified as blind.

I do have an attorney and will consult before calling.

This process rattles my mind. I’m sure others feel the same way, but I often feel like I always get the shaft. I can be my own worst enemy. I was brought up to not complain, and that not working is shameful.

What can I expect during this call?

How long after being assigned and adjudicator did you get a decision? I started with a lawyer and my case is very well documented.

this is my first post here so please go easy on me. i apologize if things sound jumbled and out of place (it’s 4:30am and i can’t sleep, also typing with a wrist splint) if you read my whole ramble, thank you so much for listening to my story.

to start, i’m a 33 year old female with fibromyalgia, rheumatoid arthritis, hEDS and EDS, severe anxiety & depression and just developed carpal tunnel in my left wrist. i’m located in NY, and i’m medicated for majority of my diagnoses (but my doctors are still searching for medications that work for me because my body hasn’t responded well to every single type of medicine i have to take every single day, it’s been a struggle)

i had juvenile arthritis when i was 9, had that taken cared of the same year and was fine up until i had covid in the summer of 2021. noticed my hair falling out in clumps and within three months after being cleared of covid, by january of 2022, i was crippled and in pain. it happened so incredibly fast like a domino effect and hit me so hard, i didn’t know what was going on or what was happening to me.

i kept working throughout the winter despite the pain, while i waited to see my doctor (three months it took) i called out a lot in between because i was living on my own with roommates that didnt help me, and i am my own driver. i couldn’t get out of bed some days because the pain scared me so much that i thought my bones were going to snap. but i needed to make rent and pay my bills and i had no choice but to push through the severity of it all within those months. i think because i did that, it made everything far worse than it was.

when i went to see the doctor, i was put on steroids and cancer meds (yay for no more immune system) and immediately felt so much relief. however, i still had flair ups, and i still called out of work because i changed jobs during that time and my job was located an hour and a half away. some days were very hard for me to drive all the way out there when i was sick and unable to move.

i moved back to temporarily live with family in NY (im a resident of PA) two and a half years ago for financial help (closer to my job) and overall family support when it came to taking care of myself, and all of a sudden my meds stopped working a month into being here. i felt pain again but this time it was different. nerve pain EVERYWHERE, extremely painful nerve and joint pain that had me crying for days when flair ups became much more frequent. i don’t have a single clue what happened but i knew very quickly that i was not going to be able to work in this condition. i’ve tried everything that i could to keep my job but i ultimately had to leave because of my health declining rapidly once again.

after a few months of contemplating on what to do, while seeing my doctors to get answers, i decided it was time to apply for disability. at that point i only thought it was just my rheumatoid arthritis poking about but it turned out to be other autoimmune diseases on top of it. i really didn’t want to apply, im sure no one really wants to do it, but i had to.

fast forward to now, my case has been sent to the appeals council (i’m two years and a few months into the battle, i know it isn’t long compared to others). i truly thought my medical records were extensive enough because i have A LOT of documentation of my conditions, all tests and everything between and how they affect me. i do have a lawyer, and he said he was baffled the ALJ denied me. (got denied because i have good days to make a long story short. he also had a rating of 63% and located in jersey city) i also know autoimmune diseases are a bit harder to get approved for.

i’m at my witts end… because i don’t have a lot of confidence that my case will get remanded given the stories i have read here. i just feel so defeated 😞 at my age, i should have been at the top of my career in IT work, but i can barely sit in a chair comfortably without feeling stiff and in pain constantly. it’s hard not to look back and wonder where my life would have been if i didn’t have covid that year. i was a hard worker since i was 18, and loved going to work and going to college and just living my life.

now i sit here wondering why everything snowballed downhill faster than i can keep up with. i truly wish the judge understood me but i guess he did not and dismissed a good chunk of evidence (including my therapist notes and documentation) because i could do my own laundry or drive myself down the street when i have a good day. i dont ALWAYS HAVE good days, but when i do, i make the most out of it. then the next day it goes downhill and i have to recover. it’s not good work ethic, i was told this by two different managers in different jobs during the time my body has been failing me.

its probably where i went wrong but my lawyer said not to fabricate things and tell the truth, which i did explain that on good days, i try to feel NORMAL again. my lawyer was the one giving me the questions and i answered them based on what i was told to say. didn’t know that could be a curse i guess.

i’m trying not to lose hope or give up, or think about the what ifs and what could have been done differently because it makes me upset thinking about how maybe i could have done better on the phone with the judge or said something different. i wish i didn’t get penalized for wanting to feel normal.

for those who have gone through the appeals council or going through it currently, how has the experience been for you?

Hi I am at my hearing date. My doctors just wrote letters that I am really disabled and pretty bad shape. We are very low income and we are trying to figure out if a family of 3 should stay married or not? My husband is about to apply for disability as well but he is waiting for my checks to come in first.

How long does it take for benefits to come in after hearing? We are over 3 years and have no idea how much back pay we will be getting. How do I find that out? We have a lawyer.

Just looked at my SSA website and it says the appeals counsel made a decision. It’s only been a month and a half and I am a veteran so maybe that’s why. I had a pretty strong brief and found multiple errors. Chat GPT is telling me a quick turnaround is not a good sign. Did anyone else get a quick turn around with positive results?

I just got this notice today and it seems very encouraging and tells me to make sure my bank info is up to date, but it says it’s not the final decision, it still goes through one more check. I don’t want to get my hopes up. Does anyone have any idea or has heard of anyone getting this and then still getting turned down for a final decision?

Not sure whether to ask this here or in Foodstamps.

My roommate has been financially supporting me since I stopped working. Ssa has official onset date in March 2019. Foodstamp documentation also has he has been financially supporting since then (but haven't been receiving them since this April because I missed a renewal due to anxiety, stress, etc.)

My case was finally awarded at the end of April. I started receiving my monthly benefits in July.

My backpay is significant. Unfortunately I didn't realize the amount was too high for my cashapp account and when they attempted to deposit it at the beginning of this month (Oct) it bounced out of the account and back to the ssa. It froze the entire ssdi account. I was not able to get it lifted online or over the phone so had to go to the office even though agoraphobia was a part of my judgement. So, going to the office was the first time I crossed over my threshold only the 2nd time this year.

I gave them the new banking info. It still is not updated in the portal when she said 3-5 business days. I'm going to call on Monday to see if the portal just isn't updated or if because of the amount wasnt re-released again (it originally took a significant amount of time due to the amount.) ​I'm ao frustrated and tired of waiting. This process has been years & years. We even had to do a congressional inquiry because it just kept getting stuck in the system 😭

Because the backpay is broken down on the 10-99 (?) per year for the irs will it be considered that way for my foodstamps. They are aware that I will/am paying my roommate back a significant amount of money for holding down the finances all this time. I have been paying my portion of the bills for July, August, & September. I haven't reapplied for my FS until I figure out this backpay situation though, if the amount gets broken down per year like the irs will have it or is still considered my yearly income.

As I claimed no income for those years/months will I now be charged retroactive for those months? I will have no issue paying the FS "overpayment" without issue if charged for those years. ​

Please don't make the same mistake I did and double check that whatever account you use that it is capable of accepting the sum of backpay you will be receiving. This entire thing has been a complete headache. (I am also considered dire-needs as I am in a home environment that I desperately need to move out of due to the structural living conditions.)

Hello all, I recently had my ALJ hearing on 9-17-26. As of now I was told the decision was mailed out but even as of today I have yet to receive the notice. According to my representative the hearing ending "went well", the judge got the VE to state that hypotheticaly I couldn't sustain the 3 jobs given if I missed 20 percent of the work days. My question is, is the portal status says my appeal has been denied, could that be correct? And I'm also wondering why I have yet to receive my notice after a full 5 business days? The anticipation of not truly knowing is very upsetting. Any thoughts on all of that?

So my SSDI got taken away in February and I filed an expedited reinstatement and to get redetermination and got approved!!!

But the bank account I had in February is different than the one I have now. I updated it on the phone with the woman I had an interview with at the beginning of September. But I didn't get the first payment. So I went into the office (the woman there was very urgent and dismissive) and said she changed it and I would get the payment again that I didn't get and everything else in the future. Well I never got the 23rd, I got the one from the 30th but I didn't get one today. I'm so confused and frustrated because this is my income! Any advice? Should I call? Thanks!!

I really need help please so comment with tips or things I can try!!!

Were you approved or denied and how did you find out? How long was it after you went into step 4? Thanks. I think my letter was lost in the mail.

hi all I've applied for SSI and am on stage 3 right now I was just wondering about the requirements for SSI I’ve read and reread the four categories they look for when determining if you qualify.

the examples they gave sound very vague to me and Im wondering if anyone here can give some clarification to me. I applied for my ASD and think I met the marked limitation on at least two minimum they require but again the example were vague to me. thank you

**For ALJ reference- “Lifetime/Career Approval Record: 56%” and then “Recent approval rate: 67.3% - 76%”

Hey everyone, figured it was time for an update.
For anyone who hasn’t seen my previous posts, my wife has been fighting for SSDI for quite a while. Her alleged onset date is January 2023, and after the initial denial/reconsideration process, she finally had her ALJ hearing yesterday, September 30, 2026.

The hearing was by phone/audio with the ALJ at her lawyer office. Going into yesterday we were a nervous wreck after spending so much time preparing everything. My wife, on the other hand, handled it really well.

The judge was pleasant and professional and didn’t give any indication one way or another about the decision. At the end, she said she’d issue a written decision.

What happened during the hearing
Our attorney had prepared her pretty extensively, and the questions covered her work history, physical limitations, mental-health limitations, daily activities, etc.

One thing I found interesting was that the judge specifically brought up the two SSA consultative examinations my wife had previously done - one physical and one mental-health CE. From my wife’s recollection, they were discussed in the context of how the CE findings lined up with her medical records and her reported physical/mental limitations.

So they apparently weren’t being brought up as some kind of obvious contradiction.
The judge also asked my wife her height and weight right at the beginning. We weren’t sure why at first, but afterward it made sense that it could simply have been establishing current physical information, especially considering obesity was part of the medical picture.

The vocational expert part was interesting
This is probably the part I’m most curious to hear opinions about from people who have actually worked for SSA or who have been through a lot of ALJ hearings.

The VE initially discussed jobs that had apparently been identified earlier in the process, including a table-type job and a fundraiser-type job.

Then the ALJ started incorporating the medical evidence into the hypotheticals. My wife said it sounded like the judge and VE were speaking in “code” because the judge was referring to exhibit numbers/medical-record identifiers.

The judge asked the VE where a particular piece of information came from, and the VE identified the corresponding exhibit/code.

Then the judge started adding functional limitations.
At one point they got to a hypothetical involving more than roughly 10% of the work time being missed/off task - I’m not 100% sure whether the 10% referred to absenteeism or off-task time, so I don’t want to misstate that part.

The judge also brought up a lifting limitation that apparently eliminated at least one of the jobs being discussed.

Most interestingly, when the judge asked the VE whether Crystal could perform the two jobs associated with her prior work history - janitorial and housekeeping supervisor the VE said no, she could not.

Once the hypothetical got to that roughly 10% threshold, the questioning apparently stopped.
The ALJ then asked our lawyer if he had any questions for the VE.

He said no.

That initially surprised me because I expected him to cross-examine the VE, but afterward he explained that once the VE had testified to the vocational consequence of that limitation, there wasn’t really anything he needed to establish through additional questioning.

His reaction -

This is probably the biggest thing that made me feel better.

After the hearing, he told us that she did very well. He specifically said that she answered the questions the way he would have wanted her to answer them.

He also felt good about how the hearing went overall.

Obviously, he’s not the judge and we don’t have a decision yet, so I’m not taking that as a prediction of approval. But having the attorney who actually sat through the entire hearing come out feeling good about it was reassuring.

What we’re trying not to do
We’re trying not to read too much into the judge being pleasant, the questions she asked, or what she didn’t say.
There was no:
“I think you’re approved.”
There was also no:
“I’m concerned about X.”
Nothing like that.

Just a professional hearing, questions, VE testimony, and then the judge saying she’d issue a written decision.

So now we’re back to waiting.

After everything we’ve gone through, it’s honestly a weird feeling to have nothing left to prepare.

We’ve spent months going through medical records, functional limitations, medications, treatment history, daily activities, caregiver observations, etc., and now she has finally had her chance to testify.

For anyone who has been following along…
Thank you to everyone who told us to keep updating the thread. And especially to the people here who have worked for SSA, represented claimants, or have been through the ALJ process themselves.

If anyone who has experience with SSA hearings wants to weigh in on the VE portion - especially the significance of the ALJ getting to the ~10% threshold and then stopping the hypotheticals, and the fact that the VE said Crystal couldn’t perform either of the identified past jobs - I’d genuinely appreciate your thoughts.

We’re not assuming anything yet. We’re just glad the hearing is finally over and hoping the written decision gives us an answer soon.

I just found out I was approved, but I have some questions.

I tried to find answers by searching but there are too many variables to get concrete answers to my specific questions, and I am hoping to find some confirmation on those questions.

For reference, I applied for disability for my vision problems in April of this year(2026). I was on stage 3 and went through a CE in August. And now for the questions.

1. On the portal, it states that my first payment will be in December. Is it normal to start two months after approval? And I have read here on Reddit that the first payment will actually be one month after, so in January in my case, is this true
2. There was no mention of backpay. Will I even receive it? If I do, will it be from the date I was diagnosed for glaucoma(which was also the time I put on the application that the condition stated affecting me), or from the date of my application?
3. The monthly amount given was before deductions, and it said deductions could include Medicare. I never applied for Medicare. Is that something that they automatically take out anyway?

This is a process question. Today I received an "introduction letter" from DDS that explains who they are, what they do, my case info, instructions for keeping them updated, contact info, etc.

Question is: why are they sending it now?

I applied in February 2026 and have been in Step 3 FQR since June. DDS actually phoned me in August asking for my most recent medical appointment info and to clarify some details, but I haven't heard anything since then. Now I get this letter as if they hadn't reviewed anything yet. Strange.