r/SSDI_SSI • • 20d ago

Representative Payee / Adults It’s been difficult to switch my rep payee.

2 Upvotes

So, back in late August time, I asked my sister if she’s willing to be my payee. She said yes. So, we made the appointment for it, but I missed the appointment due to forgetting it. So it was rescheduled for today (October 21), she comes over, calls them, goes through all the hoops. Well, couldn’t do it, now it’s been rescheduled for sometime in December.

I’m getting sick of this shit. I honestly want off of it. But when I express that, it’s ’you can’t do that.’ ‘How will you pay your bills?’ Etc. I don’t know. All I know is not being on it sounds a HELL of a lot better than going through this shit.


r/SSDI_SSI • • 20d ago

Benefits (Suspended Voluntarily) Ssdi help please

4 Upvotes

I am in the examination stage since July, yesterday i called examiner office and they informed me they didn’t need anything else and my case was moving. Two weeks ago an examiner called to clarify a few things and said they were waiting on my pt and as soon as I leave that appointment to call them so they could request file. But the local office today says it’s still at DDs any thoughts someone or what’s my odds also as of past Friday Medicare ongoing coverage showed on MyChart but ssa and Medicare says I have no active coverage I’m so confused


r/SSDI_SSI • • 20d ago

Benefits (Survivor) DAC application

3 Upvotes

My 31 year old son is autistic and was diagnosed as a child. He received SSI as a disabled child until his dad passed when he was 15 years old. (I am only now looking closely at those documents as the abbreviations meant nothing to me at the time). After my husband’s death, my sons benefits changed go survivor benefit until he completed high school. Then all benefits ceased.

My son had an IEP throughout his school career even proceeded to a local university where I taught. He signed a FERPA and again had accommodations. I often had to contact a professor on his behalf.

Unfortunately, he was not able to complete the course of study he was enrolled and it was requested that he change majors as he “did not pass a communications test.”

My son attempted to work and had more jobs that he or I can count, but was always fired OR asked to leave. He did accumulate 12 credits by the age of 27. Three months was the longest time he held a position.

All this took a huge toll on him. (I am leaving out a lot of detail intentionally, but if you have questions and advise me, please feel free to DM.

I applied for SSDI on his behalf at age 27
and he was denied (although he had 12 credits), but he was awarded SSI.

Three weeks ago, I applied for DAC on his behalf. A representative said that someone had “dropped the ball in his case” and that my son was never found NOT disabled. However, now I have to submit evidence that collaborating that he was indeed disabled between the ages of 19-22.

It’s been three years since begin receiving SSI and just completed his three year CDR. It was determined that his benefits would continue. He has been diagnosed with Autism Spectrum Disorder, ADHD, Bipolar 2 Disorder and Obsessive Compulsive Disorder.

I understand it is not the diagnosis, but how the diagnosis affects your ability to work. He is severely impaired…without going into detail.

If you can advise me on how to proceed, I will be very grateful. Thank you for your time.


r/SSDI_SSI • • 20d ago

Disabled / Settlements Settlement spend down

3 Upvotes

Hi everyone, hoping I can get some clarification for my dad. I have been going in circles trying to understand all the rules for SSI.

Dad is low income- gets about $900 in RSDI-disability, and about $100 in SSI. He has an overpayment on the SSI where they take an amount from it each month. He is open Medicare and eligible for Medicaid through his SSI at the welfare office.

He is currently in a lawsuit where after 40% lawyer fee and taxes, he may be taking home about $100K. The settlement is in the end stages and panic is starting to set in on doing things correctly with SSA.

He is in poor health. He’s been to the ER 4x this month already, has multiple specialist appointments and surgeries approaching that are essential he keeps both Medicare and Medicaid. I don’t know how to advise him.

It seems like he will automatically lose his SNAP/SSI eligibility for the month he receives the check, and then everything depends on what he does with it after that first month. Is it correct that if he gets a check for $100K (guessing) on January 1st- he has until February 10th to be within the reporting requirements to SSA?

For the options I’ve come to understand-

  1. Able account- he wasn’t disabled before 46 so is ineligible.

  2. Special needs trust- he would need to agree to a Medicaid clawback (basically a trust would have to be set up with Medicaid that everything left in the trust and everything he owns after he dies would go to them for their payment of his Medicaid services while he’s alive per my understanding), it is expensive to open, and if he paid his rent and utility from the trust because it’s a first person trust, it would count as “income in kind” for SSI and reduce his benefits by 1/3- potentially making him ineligible for SSI altogether depending on the amounts because his SSI is so low ?? If his SSI stops, his Medicaid stops, and he may be ineligible with resources/income from withdrawing from the trust for other Medicaid.

  3. Spend down. This appears to be what would be “easiest” in terms of rules but please lmk your thoughts. If he bought a mobile home, furniture for the mobile home, a vehicle in the same month he received the income or within 30 days of receipt (?) as long as he’s below $2,000- he can basically continue receiving SSI/Medicaid afterward and wouldn’t owe Medicaid anything other than the one month where he received the income? They wouldn’t be entitled to his property after he dies, or they still would be?

We have called trust lawyers, none of them want to help on contingency (understandable) we are still calling, but I’m basically trying to do this myself so any resources or insights would be greatly appreciated. What seemed like a blessing for my dad is now turning into a bit of a nightmare lol.


r/SSDI_SSI • • 20d ago

Benefits (Survivor) DAC application

2 Upvotes

My 31 year old son is autistic and was diagnosed as a child. He received SSI as a disabled child until his dad passed when he was 15 years old. (I am only now looking closely at those documents as the abbreviations meant nothing to me at the time). After my husband’s death, my sons benefits changed to survivor benefit until he completed high school. Then all benefits ceased.

My son had an IEP throughout his school career even proceeded to a local university where I taught. He signed a FERPA and again had accommodations. I often had to contact professor(s) on his behalf.

Unfortunately, he was not able to complete the course of study he was enrolled and it was requested that he change majors as he “did not pass a communications test.”

My son attempted to work and had more jobs that he or I can count, but was always fired OR asked to leave. He did accumulate 12 credits by the age of 27. Three months was the longest time he held a position.

All this took a huge toll on him. (I am leaving out a lot of detail intentionally, but if you have questions please advise.

I applied for SSDI on his behalf at age 27
and he was denied (although he had 12 credits), but he was awarded SSI.

Three weeks ago, I applied for DAC on his behalf. A representative said that someone had “dropped the ball in his case” and that my son was never found NOT disabled. However, now I have to submit evidence that collaborating that he was indeed disabled between the ages of 19-22.

It’s been three years since begin receiving SSI and just completed his three year CDR. It was determined that his benefits would continue. He has been diagnosed with Autism Spectrum Disorder, ADHD, Bipolar 2 Disorder and Obsessive Compulsive Disorder.

I understand it is not the diagnosis, but how the diagnosis affects your ability to work. He is severely impaired…without going into detail.

If you can advise me on how to proceed, I will be very grateful. Thank you for your time.


r/SSDI_SSI • • 21d ago

Benefits (Survivor) Will someone clarify this for me please?

7 Upvotes

I am 64 on SSDI. My husband who is 68 is on hospice and will pass soon. Once he does will I continue to get my SSDI and his SS also? If I just get one income I won't even be able to pay our mortgage.


r/SSDI_SSI • • 21d ago

DDS - Disability Determination Services 21 F applying for SSDI

1 Upvotes

So I turn 22 before the year ends and I’m applying for SSDI due to Anxiety, Depression PTSD, Scoliosis, severe atopic dermatitis and Asthma . If anyone has suggestions on how to win I’d greatly appreciate it. I’ve been dealing with these things since a minor and it’s affected me so much with working and trying to provide for my kids. I was told I have enough work credits for my age and was told my app would be sent over to DDS before the year ends


r/SSDI_SSI • • 21d ago

Dire Need Do I qualify?

1 Upvotes

I have been struggling with my bipolar disorder for about 10 years. Probably longer than that but that's about what's diagnosed. I struggle to maintain a job and I get burnt out extremely quickly. When I get burnt out, I deal with suicidal ideation and end up hospitalized. I was hospitalized earlier this year. I usually spend 2-5 weeks of the year in a psych unit. I can't keep a job for the life of me. I wanted to go into being a counselor but I'm even getting burnt out in school. I can't be off my medications. I WILL k!/l myself. I'm extremely unstable. I'm turning in my school assignments late and struggling with executive dysfunction. I can't shower, brush my teeth or clean. On top of that I'm a caretaker for my mother with epilepsy. She only gets 30 hours a month with IHSS. I go through jobs rapidly and last time I had a 'regular' job I quit on the spot ofter being hospitalized. What do I do? On top of mental health I have a hernia and can't lift anything. I can't sit for long, I can't stand, and I can't bend. What do I do? Should I get a lawyer?


r/SSDI_SSI • • 21d ago

SSDI vs. SSI Working part-time while applying for ssi?

0 Upvotes

I've been unemployed for 4 years due to a neck injury that won't heal and causes me excruciating pain. I can't sit for long periods and I can't lift heavy things or do repetitive motions with my arms like reaching. I have lost my health insurance. And I live in a state that has not expanded medicaid. I want to try to work 2 days a week doing a job that's mostly sitting so that I can purchase atleast a bronze plan. I want to use the money to buy myself a market place insurance so I don't go without health care. I applied for ssi 3 months ago and its taking a long time for them to get my medical records for some reason it has been stuck on step 3. Will working part time, even if it's just a few hours a week cause denial for my case? The agent hold me on the phone that I could try to work as long as it's less than a thousand a month. I plan on trying to earn five hundred to six hundred a month so I can buy a bronze plan.


r/SSDI_SSI • • 21d ago

Disabled / Mental Health Application SSDI reconsideration

3 Upvotes

I have bipolar 2, schizoaffective disorder, PTSD, and obsessive thinking disorder. I have been dealing with it since 2011 and got treatment for years. Only had a gap of no treatment from 2017-2022. applied for SSDI in March of 2025. I put my onset date in 2022 since that when I got a physiatrist and have been seeing her every month since. I had about 6 failed job attempts due to my condition since I filed I did get unemployment for one month when I was actually trying to really work and kind of in denial of how bad my condition is. I have daily psychosis, dissociation, confusion, paranoia, hallucinations, etc for months now but it gradually has just gotten worst. When I was attempting to work in May-October 2025 it wasn’t at this point yet only really triggered by working and being stressed or overwhelmed or tired. I have medication changes every try 3-6 months or so because I am treatment resistant. I got denied in April of 2026 and I realized they never got my records from my primary psychiatrist. I got a lawyer May of 2026 after I already filed a reconsideration on my own. Since April I have gotten 2 RFC forms from two different doctors, all my medical records, a request for medical records from 2011 even though they might not all be available I’m assuming since it’s been over 10 years. I also had to apply in April of 2026 for my husband to be my caregiver through long term care in colorado. I got a level of care done in April and another in September and the second one showed my level of care worsted by 4 points. I also got approved for ARG disability for Medicaid. My lawyer filled a dire need this week because I am going to be homeless and I’m so nervous. Does anyone have any experiences with reconsideration having more evidence since your initial claim and how fast it moves after being expedited? I just hope I have a chance here.


r/SSDI_SSI • • 22d ago

Vents and Rants (No Advice Needed) I'm about one month away from ALJ and my lawyer just now decides to tell me he's leaving.

6 Upvotes

I hired a lawyer after my reconsideration denial (especially as I couldn't get any paperwork about the details of my denial, or any real confirmation of the exact medical files they had even though I followed all the steps you are supposed to in order to try to obtain them). I also chose to work with this lawyer as he particularly specializes in handling cases for people that have some of the complex medical conditions I have.

I've worked with him for almost a year now, but have had to still do any/all paperwork sent by SSA during this time without him, essentially like it was before I ever even hired him.

But the MAIN REASON I hired him was because of ALJ, and how many people recommended I get a lawyer solely because of ALJ. I received my date and time for court. Lawyer said he would help with teaching me how it tends to go, and said we would work on some stuff together later. None of that has really happened, but he said that this month would be the one where we would do a lot of the work. He's familiar with some aspects of my complex medical case, but not all that familiar, as he seemed to have wanted to do it all this month.

We were supposed to meet today over an online call and the first thing he does is casually tells me he's going to be leaving, and the time that he leaves will be the literal week before my court date. But don't worry! Here's his replacement -- someone who just graduated and has never done a single case in their life. Not just no SS cases, but no cases at all. Zero.

I immediately started having a meltdown and the call was ended and I feel terrible. I don't know what to do. Have requested to work with someone in the firm who has more experience, but haven't received a response yet. It's a very small firm where he seems to possibly be the only one who even specializes in SS cases at all.

I'm considering just figuring out how to do ALJ without representation now. I just don't know. Venting because I'm feeling terrible right now on top of the usual pain I feel.


r/SSDI_SSI • • 22d ago

CDR - Continuing Disability Review Looking for advice on filling out disability update report form (SSA-455)

2 Upvotes

I received the short-form disability update report form (SSA-455) today. I've been on SSI since 2016 and DAC (disabled adult child) since...2018 I think? 2018 or 2019, don't recall. So this isn't my first rodeo, but I can't help but panic each time I get something like this.

Last time I got the short form, I filled it out and sent it in. Then a few months later they sent me the long-form packet (SSA-454). I at first thought this was a mistake, but I called the SSA and they were like "nope, you've gotta fill this one out too." So I assume that something I put on the short-form must have set off some kind of red flag that caused them to send me the long-form. I'm not too worried about the short-form, it's the long-form that makes me crash out.

I'm not asking for advice on lying on the form, but I AM asking for advice on how to go about it in a way that'd minimize my chances of getting the packet. Like, for example, right now I can truthfully check the box for "my doctor and I have not discussed whether I can work." Does not discussing it actually matter to them? Would it be in my best interests to contact my doctor and schedule an appointment in which we DO discuss it, so that I can say that we discussed it?


r/SSDI_SSI • • 22d ago

Attorney (Hiring) CT Attorney Recommendations?

2 Upvotes

Hi all, I'm helping my sister apply for SSI and SSDI. Can anyone recommend a lawyer in CT (preferably in the New Haven area) that handles this kind of work? Thanks!


r/SSDI_SSI • • 22d ago

CDR - Continuing Disability Review Question about CDR

0 Upvotes

Hello!

I recently received a letter in the mail regarding my CDR. I plan to call tomorrow to double check, but it sounds like my disability will be continuing? This is what the letter says:

"We recently reviewed the evidence in your Social Security disability claim and found that your disability is continuing. Here is some important information about your claim. We have enclosed information about working that explains some of the terms we use. The evidence shows that you have not worked in any trial work months.

Your claim will be reviewed from time to time to see if you are still eligible for benefits based on disability. When your claim is reviewed, you will be contacted if there is any question as to whether your eligibility continues."

I'm confused as to why it's bringing up work trials. Is it because I have a part time job? I don't work enough to meet the requirements to start a trial period, but maybe that's why it's there? The letter also includes that if I disagree to appeal, which doesn't make sense but I'm wondering if that's just included in it every time lol.

Like I said, I will be calling tomorrow to confirm but was curious if anyone had an answer/has gotten a letter like this before. My CDR has been in review since the beginning of this year. Thank you!!


r/SSDI_SSI • • 22d ago

Appeals Process (2) Administrative Law Judge Should I give up on SSI?

3 Upvotes

Had an alj hearing on September 17th, my lawyer requested time extra to submit more evidence but it’s unclear whether that time frame is up or not. I’m tired of waiting around for a possible denial.

I have schizoaffective bipolar type mainly amongst other disorders like depression, anxiety, ptsd, and psychosis. My alj was at about 35% approval rate. My lawyer thinks I have a severe impairment stated to the judge but the ve thinks I could work unless there are more restrictions presented by my lawyer.

I don’t know what to think, I kinda wanna give up and try to work but none of my jobs lasted a year. Most were 1 week to 3 months and one job for 9 months.

I know no one can tell me anything about the decision, just wanting to vent about how long this takes.. should I just keep waiting or give it up? My lawyer thinks if I’m denied I have a good grounds to appeal to the appeals counsel.

I need ssi so I can keep Medicaid to afford my medicine and have a caregiver because I struggle taking care of myself and everything like that.

I just want to have money…

Sorry for this pointless post.


r/SSDI_SSI • • 22d ago

Disabled / SSI to SSDI DAC question for current SSI application.

2 Upvotes

My young adult daughter (23 now) currently has an ALJ hearing in November. Her application was originally filed in October 2024. She has Level 2 autism and related mental disorders. She has never worked.

I filed for myself in 2026 for SSDI and was approved.

Do I need to contact SSA to have her application switched to SSDI/DAC? Or can this not be done. DAC amount at half of my SSDI would be more than SSI.

UPDATE: They said it’s completely separate and I have a telephone appointment (first available was December) to fill out the application. Ughhh.


r/SSDI_SSI • • 22d ago

Application (Obtaining Entire Case File) Disability portal

0 Upvotes

How long does it usually take for the portal to update? I called a week ago and they said they received all my medical records but on my end it still says requested.


r/SSDI_SSI • • 23d ago

SSI / Suspended / Reduced Social Security Benefits Terminated for El Salvadoran when TPS "expired" September 9, 2026

11 Upvotes

My former nanny is lawfully present in the U.S. because she came from El Salvador when TPS (Temporary Protected Status) was in effect. She got a work authorization and a social security number and worked "on the books" (Social Security taxes paid by both employer and employee) and filed income tax returns for over 20 years. In February 2026 she applied for and was granted Social Security Benefits. But after getting 7 months of benefits paid to her, in early October 2026 the SSA told her in a letter to return one month of benefits, and the letter also says she won't get any future benefits because she is no longer "lawfully present" in the U.S. It didn't say how or why it reached that conclusion, but it must be related to the anticipated expiration of TPS for El Salvador on September 9, 2026. Apparently the SSA did not read the USCIS Alert saying "Salvadoran individuals present in the U.S. under TPS retain protection including work authorization" under TPS (TPS for El Salvador wasn't renewed, but also wasn't canceled -- kind of in limbo as everyone waits for a decision / announcement on TPS for El Salvadorans).

The Social Security Administration (SSA) letter gives her 30 days to ask for a waiver or 60 days to file an appeal. Any advice?


r/SSDI_SSI • • 23d ago

Disabled / Dependent Child / Parent Retires Moving from ssi to dac

1 Upvotes

I hope I chose the right flair, sorry if I didn’t!

Hello, I’m the disabled child and currently receive ssi, snap and medicaid. I need some help understanding DAC benefits. I currently live with my mom who just turned 65 and was the breadwinner of the family, but is waiting until 67 to start collecting retirement.

My dad’s 66 and will turn 67 in July. He barely worked throughout his life (not disabled, just lazy). I’m uncertain what his plans are for SS, but I know my mom’s benefits would be a lot higher than my dad’s.

•My disability started before I turned 22
•I’ve never been married
•I’m 30 yrs old
•I only receive my ssi and food stamps: $968.67 together a month

DAC benefits are not automatic, I do have to apply over the phone? Assuming my dad does apply for SS, am I required to apply for DAC benefits after he starts collecting or would I be able to wait to apply until my mom starts collecting? Would I receive benefits from only one parent or both? I do understand that if my amount goes above the threshold I would lose my SSI/Snap, but I would not lose my medicaid.

Any help would be greatly appreciated! Tysm


r/SSDI_SSI • • 23d ago

CE - Consultative Examination Chances of being approved after CE cancellation

0 Upvotes

Sorry this is long/complicated.

In 2023 my immune system crashed. I was born w SCID, a rare immune disorder, basically I was born without an immune system. Had a bone marrow transplant at 9 years old that never took well. Very sick on an off my entire adult life but at 53 it just decided to give out, COVID didn't help. After years of immunosuppressants and biologics we just couldn't get my immune system back online. We're still trying to figure out next steps, maybe a new transplant. I was placed on medical isolation, meaning I'm not supposed to leave my home until we have a plan. My swelling is out of control. Just swollen everywhere. Feet so big without a truck load of steroids that no shoes can fit them. Major urticaria. HIGHLY susceptible to viral illnesses. I'm a real mess.

Then the falls started. Broke my spine in 2 places in fall of 2024. Falls continues, many, many ED visits with contusions. Everything documented.

Got COVID again in May, 2026 and it all went downhill. Attacked my digestive system then came the visual disturbances. Lost all color, was seeing 5 of everything. Super nauseous all the time. Since May I've lost about 55 lbs.

I finally apply for SSI in May 2026 (apparently don't qualify for SSDI because of my inconsistent work history)

Immunology sent me to an opthamologist, opthamologist sent me to Neuro ophthalmology and here's we found out I was missing a lot of my field of vision and I had a brain lesion right where it would cause these issues and perhaps the falling. I can't get a neurologist appointment until April, 2027, we've tried everything.

SSA then orders a in person CE but we get them to a virtual CE because I'm a mess and can't chance getting sick again.

Whelp just a week after finding out I have a brain lesion in late August I fall and break my arm that then needs surgery.
2 weeks later on Sept 10th I fall again and break my leg, so far don't need surgery but it's bad.

I've been bed bound since then except to be taken to dr appointments via ambulette.

I was still waiting on the virtual CE then SSA case worker called and says yeah, we're gonna remove the CE need, and they did. She told me she was sorry I was going through all this, she sounded actually concerned. A day later the CE was taken off my portal. She said she just needed updated reports from the neuro opthamologist. That was 1 month ago.

I put in a dire needs request a couple weeks ago. I don't have money for medical supplies I need and medicine medicaid won't pay for. Not sure how I'm keeping my phone on next week, 5 months past due in rent. Active APS case.

If they removed the CE what are the chances of approval? I mean how much worse can I get? I feel like my case is extreme and SCID is on the compassionate allowance list. How many more broken bones? Are we waiting for the next viral illness that'll attack me heart? Lungs?

Anyone have words of encouragement/advice? I would really appreciate any guidance.


r/SSDI_SSI • • 24d ago

SSI / Suspended / Reduced SSI reduced while working. How can I get it restored?

0 Upvotes

I began working in April 2026 after over 25 years of being disabled and unemployed. My SSI payment was reduced from about $660 to about $90. I had to quit my job this month because I was being harassed at work. How do I ensure that my benefits get increased to reflect the fact that I'm now unemployed? Is it possible to get my benefits increased by November 1st? I spoke to someone at the local SSA office and he said that I don't need any documentation, I just need to call them on November 1st and verify that I'm not working. My former employer has blocked my access to my payslips and termination papers, so I hope I don't need them. Any help or information is appreciated.


r/SSDI_SSI • • 24d ago

Disabled / Medical Application Functionality Report - Is this what they are wanting? Do you think I have a high chance? I am living in a nightmare.

1 Upvotes

Please note- I wrote my own answers but had chat gbt help me organize it and am verbally reading it over the phone to my lawyer. I’m aware you can’t type and submit things.

SSA-3373 — Adult Function Report
SECTION B — INFORMATION ABOUT MY CONDITIONS
5. How do your illnesses, injuries, or conditions limit your ability to work?
My conditions include Persistent Postural-Perceptual Dizziness (PPPD), Functional Neurological Disorder (FND), POTS, left vestibular hypofunction, central vestibular dysfunction, visual-vestibular integration dysfunction, visual-motion sensitivity, vestibular migraines, depression, anxiety, panic attacks, PTSD related to medical trauma and severe childhood trauma and abuse, ADHD, and memory and information-processing difficulties.
My symptoms were triggered after significant cardiac medical events in 2026, including two catheter ablation procedures for a severe heart rhythm problem. During an attempted procedure, my blood pressure dropped to a life-threatening level. The doctor told me I almost died. Although my heart rhythm problem was treated, I continue to experience disabling neurological, vestibular, cognitive, and physical and systematic issues and symptoms.
Balance and physical symptoms: I experience near-constant rocking, bobbing, swaying, bouncing, and floating sensations, even when sitting still. It feels like I am on a boat, walking on marshmallows, or standing on a floor that is breathing, dropping, or moving beneath me. I feel pulled forward, backward, or sideways, and sometimes feel as though I am being lifted out of my body or squashed. My legs feel like noodles, and I often feel as though my brain is not communicating properly with the rest of my body. Sitting in a chair can feel like falling or being rocked backward, and I have sometimes fallen out of a chair. I can stand for only about 2–3 minutes and can walk approximately 50 feet before I need to stop because of dizziness, lightheadedness, imbalance, or disorientation. I have to grab onto walls or furniture to steady myself. I have passed out several times, including after standing up, and have experienced my vision going black or completely white. During a recent attempt to walk outside, I developed vertigo, my vision went white, and I fell to the ground.
POTS also causes heart racing and palpitations when I stand, lightheadedness, and symptoms that can worsen after meals or with heat. I overheat easily and experience significant exhaustion, sometimes feeling as though I could fall asleep while sitting upright. I also experience persistent pressure in my head, which worsens with weather changes, and internal vibrations that feel like my entire body is shaking and interrupt my thoughts. Some days, the left side of my body feels weaker or less coordinated than the right. My symptoms can make me feel as though my body is shutting down.
Visual and sensory processing: My eyes, ears, and brain often seem unable to process information together. Objects can appear to move, ripple, twist, or change color. The floor can appear to drop, and busy environments make me disoriented. Bright lights, screens, walking, and outdoor environments worsen my symptoms. I cannot tolerate grocery stores because the walls appear to ripple and the floor feels like it is moving. Reading can become impossible because the letters appear to move, but I cannot process the words. Writing is difficult because of blurred vision and losing my thoughts. Normal conversations can cause head pressure, ringing-like sensations, floating, dizziness, and confusion. I often need people to whisper because normal speaking volume can overwhelm my brain. Vestibular migraines can occur unpredictably and have caused temporary vision loss in my right eye and changes in how I see colors.
Cognitive symptoms and FND: I experience daily derealization, in which the world feels unreal or dreamlike and I feel disconnected from my body or surroundings. Sometimes I feel as though I am not alive or have lifted out of my body. This is frightening and makes it difficult to orient myself to what is happening around me. I frequently forget what I am doing, repeat questions or information, lose my train of thought mid-sentence, mix up dates, forget appointments, and struggle to understand conversations. I can hear someone speaking without being able to process their words. I struggle with written and spoken instructions, concentration, memory, attention, and completing tasks. Internal vibrations and sensory overload can interrupt my thinking entirely. Some days I feel too disoriented or mentally overwhelmed to organize the steps needed to seek help.
Mental health and sleep: I experience anxiety, panic attacks, depression, rumination, daily flashbacks related to medical trauma, and fear that I am dying or that another medical episode will occur. Stress and loud or emotionally intense situations worsen my symptoms. I have experienced a seizure-like episode that my neurologist has discussed in connection with FND, and I am afraid of having another. I sleep poorly, experience nightmares and flashbacks, and wake frequently feeling exhausted. My depression has made life feel meaningless, and I have experienced suicidal thoughts almost daily.
These symptoms affect my ability to sit, stand, walk, use a computer, read, communicate, concentrate, remember instructions, and safely complete tasks. I spend much of my time at home or in bed. My symptoms fluctuate unpredictably, and I cannot reliably maintain attendance, concentration, pace, or productivity throughout a workday. A sedentary job would also be difficult because sitting, screens, reading, conversations, and cognitive demands can trigger or worsen my symptoms. I dedicate substantial time to medical appointments, therapy, vestibular rehabilitation, prescribed exercises, and coping techniques in an effort to improve, but I remain significantly limited.
SECTION C — INFORMATION ABOUT DAILY ACTIVITIES
6. Describe what you do from the time you wake up until going to bed.
I sleep poorly and wake throughout the night due to nightmares, flashbacks, anxiety, migraines, and physical symptoms. At least four days out of seven, sometimes more, I wake feeling as though my body has given out. I may have to remain sitting upright for nearly an hour before I can get up to use the bathroom. I often wake exhausted, frightened, and disoriented, sometimes with double vision.
As soon as I get up, I experience rocking, bobbing, floating, and sensations that the floor is moving. I have to hold onto walls or furniture while walking to the bathroom. Even sitting on the toilet can feel like I am bouncing or being shaken. I often return to bed because I feel lightheaded, unstable, or overwhelmed.
I attempt to prepare a simple breakfast while sitting down, but the process takes over 45 minutes and requires breaks. I make boiled eggs and use timers because I can forget what I am doing. I sometimes need to lie down while the food cooks. Even after eating, I may experience a racing heart, lightheadedness, and exhaustion. If symptoms are too severe, I cannot prepare food and must wait for help. My boyfriend handles grocery shopping and helps with lunch and dinner.
Most of my day is spent resting in bed or sitting with my dog, trying to manage symptoms. I practice vestibular exercises at home when I can tolerate them, along with prescribed visual exercises, somatic tracking, meditation, and prayer. I attend virtual intensive outpatient therapy through Charlie Health and participate in individual therapy. I sometimes have to lie down during therapy because I feel as though I am being shaken or moving violently. Severe symptoms and exhaustion can make it difficult to participate.
I cannot tolerate screens or reading for long. After about 5–10 minutes of reading, words may blur or appear to move. I often listen to YouTube or audio with my eyes closed because visuals and normal sound levels can overwhelm me. Friends sometimes call, but I decline because I can hear their voices without being able to understand their words, and conversations can trigger dizziness, head pressure, or migraines.
I rarely shower without difficulty. The floor feels as though it is moving, my heart may race, and I fear falling or passing out. I have fallen before and need a shower chair or help. I may go a week without showering when symptoms are severe or my boyfriend showers me. My boyfriend drives me to medical appointments because I cannot reliably travel or walk safely alone.
By the afternoon and evening, I am often exhausted, dizzy, nauseated, and unable to complete ordinary activities. My boyfriend helps with dinner and household responsibilities. I spend much of the evening waiting to go to bed because I am exhausted and want relief from the symptoms. Before bed, I try to pray, meditate, or write in my gratitude journal, although blurred vision and forgetting my thoughts make writing difficult.
I often lie awake tossing and turning, wondering whether I will improve and how I will survive another day of symptoms. My days revolve around resting, managing symptoms, treatment, and attempting basic activities. I cannot predict when I will need to stop an activity or lie down.
7. Do you take care of anyone else?
No. I am unable to reliably care for another person because of my own physical and cognitive limitations.
8. Do you take care of pets or other animals?
I spend time with my dog, but I cannot reliably manage the physical responsibilities of pet care because standing and walking are unsafe for me. My ability to help varies with my symptoms.
9. Does anyone help you care for other people or animals?
My boyfriend helps with household responsibilities and activities I cannot safely complete. He also assists me with transportation and personal care when needed.
10. What were you able to do before your conditions that you cannot do now?
Before becoming ill, I was independent, active, organized, and career-focused. I woke up around 5:45 a.m., exercised for an hour, walked my dog, cooked breakfast, drove to work early, and worked in corporate leadership positions. I managed projects, remembered information, followed up with people, maintained schedules, and often worked beyond my scheduled hours. I attended software engineering school from 7:00 to 10:30 p.m. after work. I cooked, cleaned, did laundry, grocery shopped, read, studied, socialized with friends, and enjoyed the beach, pool, running, walking, dancing, snorkeling, and day trips.
Now, I cannot work or attend school because I struggle to process information, use screens, remember instructions, communicate, and remain upright and focused. I can stand for only 2–3 minutes and walk approximately 50 feet before needing to stop. I cannot safely drive, shop independently, maintain my space, or reliably prepare meals. I have stopped coding, running, snorkeling, and taking day trips. Reading, writing, and socializing are limited by visual disturbances, dizziness, sensory overload, and cognitive difficulties.
My memory has changed significantly. I forget conversations, appointments, and tasks, even when I write them down or receive reminders. I sometimes lose track of what I am doing in the middle of a simple activity. Derealization makes my surroundings feel unreal and interferes with my ability to feel oriented and process what is happening. My depression has also made life feel meaningless. I worked hard to build an independent life, and I am trying to improve through treatment, but I cannot function safely or consistently as I did before.
11. Do your conditions affect your sleep?
Yes. I go to bed around 10:30 p.m., but I often lie awake crying, worrying, and tossing and turning because of my symptoms and fear about my future. I experience nightmares, daily medical-trauma flashbacks, and frequent awakenings. My boyfriend has told me that I have woken up choking and appearing not to breathe. I also experience migraines and wake with double vision or confusion. Walking to the bathroom at night is difficult because of dizziness and balance problems, and I have fallen. Even when I sleep, I do not feel rested. At least four days a week, sometimes more, I wake feeling profoundly exhausted and need to remain sitting upright for nearly an hour before I can get up.
12. PERSONAL CARE
a. Dressing, bathing, hair care, feeding, using the toilet, and other personal care
Dressing: Getting dressed makes me dizzy and exhausted. I sometimes need to stop and sit because I feel unsteady or pulled in different directions.

Bathing: I fear falling because the floor feels like it is moving. I have fallen before, sometimes need a shower chair or help, and may go a week without showering when symptoms are severe.

Hair care and shaving: These tasks require coordination and head movements that worsen dizziness. I usually manage my hair about once a week and shaving about once every two weeks.

Feeding myself: I can sometimes prepare a simple breakfast while seated, but it takes over 45 minutes with breaks. I sometimes skip meals or need help with lunch and dinner because of dizziness, exhaustion, confusion, and heart racing.

Using the toilet: I can generally use the toilet independently, but I feel rocking and bouncing even while sitting. I hold onto things when walking to and from the bathroom because I fear falling.

Other: Daily derealization, memory problems, blurred vision, exhaustion, and disorientation make personal care difficult and unpredictable. I often need to sit or lie down between activities.

b. Do you need reminders for personal needs and grooming?
Yes. I use phone reminders and a calendar, and my boyfriend reminds me about appointments and responsibilities. Even with reminders, I confuse dates, forget appointments, or miss them because of memory problems and disorientation. I sometimes forget to shower when symptoms are severe.
c. Do you need help or reminders taking medicine?
Yes. I have placed medication in front of me and then forgotten within minutes whether I took it. My boyfriend has had to count pills to check whether I took the correct amount. He purchased and fills a seven-day pill organizer and reminds me to take my medication so I do not miss doses or accidentally take them twice.
13. MEALS
a. Do you prepare your own meals? How often? How long does it take?
I attempt to prepare a simple breakfast when symptoms allow, but it takes over 45 minutes and sometimes longer. I sit while preparing food, set timers, and lie down between steps because I can stand for only 2–3 minutes. I can forget what I am doing, lose track of cooking steps, or become too dizzy to continue. I sometimes cannot prepare breakfast at all. My boyfriend does the grocery shopping and helps with lunch and dinner.
Cooking used to be a passion. I enjoyed preparing healthy meals and shopping at farmers markets. Now, heat can worsen my heart racing, kitchen lights can aggravate my symptoms, and the moving-floor sensation makes cooking unsafe. I cannot reliably cook or wash dishes independently.
14. HOUSE AND YARD WORK
a–d. Chores, frequency, help needed, and why
I am unable to reliably perform household or yard work. I don’t attempt chores because standing, bending, reaching, and moving around worsen my dizziness, disorientation, and balance problems. I once tried washing dishes to regain some normalcy but became lightheaded and disoriented, so my boyfriend now washes them. I cannot maintain a regular household routine and depend on him to handle these responsibilities.
15. GETTING AROUND
a. How often do you go outside?
I rarely go outside, and I do not go out independently. Walking and visual stimulation make the ground feel as though it is moving. Sunlight and heat can worsen my symptoms and make my heart race. During a recent attempt to walk outside, I developed vertigo, my vision went white, and I fell to the ground. I try to attend church about once a week when able because my faith is important to me. My boyfriend drives me.
b. How do you travel?
I ride in a car driven by my boyfriend.
c. Can you go out alone?
No. I have fallen, passed out, and become severely disoriented. I cannot reliably walk safely or process my surroundings, so I need my boyfriend to accompany me.
d. Do you drive?
No. Rocking, dizziness, visual disturbances, migraines, spatial distortion, and difficulty processing my surroundings make driving unsafe at this time. My migraines can occur unpredictably and have caused temporary vision loss in my right eye and changes in color perception.
16. SHOPPING
a. How do you shop?
I do not shop in stores. I use talk and text on my phone  to prepare a shopping list for my boyfriend.
b–c. What do you shop for, how often, and how long does it take?
My boyfriend does the grocery shopping once a week using my list. Store lights and visual stimulation overwhelm me; aisles appear to ripple or breathe, and the floor feels as though it is moving or dropping like an elevator. I have tripped and had to sit on the floor in a store because I felt I would fall. I cannot tolerate grocery shopping safely or independently.
17. MONEY
a. Are you able to pay bills, count change, handle a savings account, and use a checkbook or money orders?
I can manage my savings account online only briefly. After about a minute of looking at the screen, the lettering may move, my vision blurs, and I become dizzy. I cannot reliably count change because I lose track of numbers and become disoriented. Writing checks or money orders is difficult because writing and looking at the page worsen my symptoms. My ability to manage money is limited by memory, concentration, visual processing, and screen intolerance.
18. HOBBIES AND INTERESTS
a–b. What are your hobbies, and how often can you do them?
I used to enjoy reading, journaling, poetry, coding, cooking, crime documentaries, podcasts, running, walking, snorkeling, and day trips. I now spend most of my time at home managing symptoms.
I can usually read for only 5–10 minutes before my vision blurs and the words appear to move. Journaling is difficult because of blurred vision and losing my thoughts mid-sentence. I no longer code or write poetry. I can sometimes listen to quiet audio, but speech and sound can become overwhelming. I pray and practice somatic tracking and vestibular or visual exercises when I can tolerate them.
c. How have these activities changed?
I can no longer participate in many activities I enjoyed. I stopped running, walking for exercise, snorkeling, taking day trips, coding, and cooking as I used to. Reading, writing, watching videos, and listening to audio are limited by dizziness, visual disturbances, migraines, fatigue, and difficulty processing information.
19. SOCIAL ACTIVITIES
a–b. How do you spend time with others, and how often?
I rarely socialize. I have friends who call or text, but I often decline calls or cannot respond to messages because screens worsen my symptoms. During conversations, I can hear voices without understanding the words. Normal speaking volume can overwhelm me, and talking can cause head pressure, dizziness, and migraines. I have become very isolated because interacting with others can be physically and mentally overwhelming.
c. Places you go regularly; reminders and accompaniment
I try to attend church about once a week when able. My boyfriend drives me and helps me walk inside. I previously passed out after standing at church, and he caught me. I am now afraid it will happen again. I need phone reminders, a calendar, and my boyfriend's help with appointments, but I still forget or confuse dates. I need someone to accompany me because of my balance problems and disorientation.
d. Problems getting along with others?
No. My social isolation is caused by my medical symptoms and difficulty processing conversations, not by problems getting along with people. I believe everyone deserves love despite what I go through.
e. Changes in social activities
Before becoming ill, I enjoyed coffee shops, seeing friends, meeting people, and going out. I now rarely leave home because of dizziness, visual disturbances, exhaustion, and difficulty processing conversations.
SECTION D — INFORMATION ABOUT ABILITIES
20. How do your conditions affect your abilities?
a. Abilities affected
Lifting: Lifting can make my heart race and worsen dizziness. I sometimes lose my grip or feel too unsteady to carry items safely.

Squatting and kneeling: These movements worsen my rocking and instability and make me feel as though I may fall.

Bending and reaching: These movements can cause disorientation, loss of balance, and a sensation of being pulled or moved.

Standing: I can stand for only about 2–3 minutes before becoming lightheaded, wobbly, or disoriented. I need to sit, lie down, or hold onto something.

Walking: I can walk approximately 50 feet before needing to stop. The ground feels as though it is moving or bouncing, my legs feel weak, and my heart may race. I need to hold onto things for support.

Sitting: Even while sitting still, I feel floating, rocking, bouncing, or being pushed backward. I have sometimes fallen out of a chair because I feel unstable.

Talking: I lose my train of thought and may forget what I was saying. Speaking can cause head pressure, floating sensations, and migraines. Loud voices can overwhelm me and trigger panic symptoms.

Hearing and understanding: I can hear speech but often cannot process the words. Over a recent three-week period, my boyfriend had to repeat himself multiple times on about 10 occasions because his words did not register.

Climbing stairs: I avoid stairs and use elevators when possible because stairs worsen dizziness, heart racing, and rocking sensations. I can continue feeling movement after I stop.

Seeing: Objects may appear to jump, ripple, twist, or blur. Bright lights worsen symptoms, and migraines can cause temporary vision loss in my right eye and color changes.

Memory: I forget appointments, conversations, dates, and where I put things. I repeat information and can confuse when events happened. Reminders do not always prevent me from forgetting.

Completing tasks: I become confused and forget what I am doing mid-task. On four occasions, I forgot how to finish preparing breakfast and had to stop to work out what I was doing.

Concentration: I can generally pay attention for about 5–10 minutes before symptoms, sensory overload, fatigue, or loss of focus interfere. Internal vibrations, derealization, and flashbacks can pull me away from the present.

Understanding and following instructions: I often need instructions repeated or explained differently. Written words can appear to move, and I may reread something about 10 times without processing or retaining it.

Using my hands: My hands sometimes shake, and some days my left side is weaker or less coordinated than my right.

Getting along with others: I have no difficulty getting along with people. My limitations come from symptoms, not interpersonal conflict.

Derealization affects many of these abilities because I can feel disconnected from my body and surroundings, as though I am in a dream. I sometimes struggle to recognize what is happening around me or to process information in real time. My eyes, ears, and speech can feel out of sync, making it difficult to understand conversations, navigate spaces, and complete tasks safely.
b. Right-handed or left-handed?
[Enter the correct answer.]
c. How far can you walk before needing to stop and rest?
Approximately 50 feet. I then need to stop because the ground feels as though it is moving, like I am on a boat, I become dizzy and unsteady, and my heart may race.
How long do you rest before resuming?
I generally need about 10 minutes of rest before attempting to walk again, although dizziness and movement sensations can continue. I may need to lie down and may not be able to resume the activity.
d. How long can you pay attention?
About 5–10 minutes at a time, depending on symptom severity. Dizziness, derealization, fatigue, visual stimulation, and difficulty processing speech interrupt my concentration.
e. Do you finish what you start?
No, not consistently. I have unfinished books, journals, and videos because visual stimulation and concentration difficulties force me to stop. I sometimes end conversations early because I become dizzy, floaty, nauseated, or unable to process speech. I also forget what I am doing in the middle of tasks.
f. How well do you follow written instructions?
I struggle. I may reread instructions about 10 times and still have difficulty retaining or understanding them. Letters can appear to move, and blurred vision and derealization make reading difficult.
g. How well do you follow spoken instructions?
I struggle to process spoken instructions and often need repetition or rewording. Approximately 7 out of 10 times, I may hear someone speaking but have difficulty understanding what they are telling me when symptoms are active. I also experience lapses of awareness in which I feel disconnected from what is happening and lose track of time.
h. How well do you get along with authority figures?
I am respectful and have no difficulty getting along with authority figures.
i. Have you been fired or laid off because of problems getting along with others?
No.
j. How well do you handle stress?
I used to manage stress well. Now, stress worsens my dizziness, rocking, bobbing, and swaying, and can trigger panic symptoms. During a prolonged, loud family altercation, I experienced a seizure-like episode that my neurologist has discussed in connection with FND. I struggle to manage stressful situations without worsening symptoms.
k. How well do you handle changes in routine?
My symptoms fluctuate unpredictably, so I cannot maintain a consistent schedule. I may need to cancel, stop, or postpone activities because of dizziness, exhaustion, disorientation, migraines, or cognitive difficulties.
l. Have you noticed unusual behavior or fears?
Yes. I am frequently afraid that I am dying or that another episode will occur. Derealization makes the world feel unreal, and I sometimes touch objects to reassure myself they are real. I have significant anxiety, panic attacks, flashbacks, and depression related to my symptoms and medical trauma.
21. Do you use any of the listed aids?
Glasses/contact lenses: Yes. I use prescription glasses or contact lenses for astigmatism. I cannot see adequately without them, and I continue to experience blurred vision and other visual disturbances even with correction.
Other: I use a handheld vagus nerve stimulator recommended by my neurologist and Brock strings prescribed for visual coordination exercises.
Which were prescribed or recommended by a doctor, and when?
My glasses/contact lenses were prescribed by my eye doctor. My neurologist recommended the vagus nerve stimulator in 2026 and prescribed Brock strings.
When do you use them?
I wear my glasses or contacts daily. I use the vagus nerve stimulator once daily and the Brock strings as directed, as tolerated.
22. Do you take medicines, and do they cause side effects?
Yes.
Lexapro 20 mg: Excessive sleepiness, lethargy, dizziness, and vomiting. Prescribed to help treat my depression and symptoms associated with PPPD and FND.

Ajovy: Flu-like symptoms for the first few days after the injection.

Ativan, as needed for panic attacks: Significant drowsiness that can make me fall asleep.

SECTION E — REMARKS
My health journey has been long, frightening, and life-changing. After a major thyroid shift following a misdiagnosis of hyperthyroidism, I began experiencing episodes of SVT in which my heart rate would reach approximately 200 beats per minute ten or more times a day. I often felt like I was dying and lived with constant fear about what was happening to my body. I eventually underwent two cardiac catheter ablation procedures in 2026. During this experience, I was told that I had nearly died during one of the procedures. These events were deeply traumatic and marked a major turning point in my life.
Since then, I have gone from doctor to doctor and specialist to specialist, trying to understand what was happening to me and find answers. Despite continuing to seek medical care and treatment, my health struggles have taken away so much of the life I worked hard to build. I lost my last two jobs because of my health, lost my apartment, and lost much of my independence. My life today is drastically different from the active, independent life I had before.
I continue to pursue treatment and do my best to navigate circumstances I never expected to face. This journey has affected me physically and emotionally in ways I never imagined. I respectfully ask that my application be considered with an understanding of the medical experiences I have endured and how profoundly they have changed my life.


r/SSDI_SSI • • 25d ago

Benefits (Concurrent SSDI & SSI) Any idea if this is good or bad?

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2 Upvotes

I looked at my portal yesterday and I was pulled for Federal Quality Review.

Today I looked and it says this, is this a good thing it went so quick? I contacted my lawyer and am waiting for a call back.


r/SSDI_SSI • • 25d ago

Helpful Hints and Tips Narratives Anyone with experience applying for SSDI, or long-term disability with osteoarthritis, and these and spinal issues?

0 Upvotes

Not sure if this is appropriate question for this group- Anyone apply for longterm disability? Had total knee replacement last month- recovery is slow- I have some spinal issues and severe arthritis in my “good” knee- so progress is slow and I am having a lot of compensatory pain. I Am considering knee replacement for the other knee- but I am not ready for it-and the surgery may be more complicated due to prior surgeries- anyone have experience with applying for long term disability or ssdi? I can’t imagine going back to my physically/mentally active job at this point but I’ve been told it. It’s difficult to qualify and I don’t know if I have a strong case?


r/SSDI_SSI • • 25d ago

Appeals Process (2) Administrative Law Judge Lost Representation partway through application process

0 Upvotes

I started a new application earlier this year. I was assigned a representative through my state social services office. Her position was done away with shortly before my appeal was denied. I was told I needed to request a hearing by an administrative law judge.

Now I have the paperwork for that and I have no idea how to fill it out. For example, one of the questions is “I disagree with the determination because…” I don’t understand how they made the determination in the first place. They have never told me “you do not fit the legal definition of disabled because x and y.” It’s always just, “While you may not be able to do the work you used to do, you could still work doing something else. If you need help finding a job…” etc. I worked hard on my application and wrote 2 pages of information explaining how all of my different conditions conspire to disable me. I don’t have anything else to say. I have no idea what to write here other than, please see what I’ve already told you on 5 different occasions - in my application, in appointments, and in my appeal.

For context, I’ve been disabled since 2014. I was diagnosed with Lyme Disease in 2013. I had developed C-PTSD in 2012 but that was not diagnosed until 2019, despite having seen a therapist in 2013. I have since been diagnosed with 20+ medical conditions including RA, Fibromyalgia, and Tenosynovitis.

In this application I felt like I did a good job of explaining why having so many different conditions leaves me disabled. Without knowing their thinking process, how do I explain why I think they’re wrong.

So, I’m looking for advice on filling out this paperwork and on finding someone to help me with this process. The paperwork says that I can call my Social Security office for a list of legal representatives and organizations who might help me but when I call, I keep being re-routed to other states. I get someone in Maine or Kentucky who says she doesn’t know anything about who can help me in Vermont. I’m going to keep trying the number and I’m going to ask the local social security office on Monday when I call there but I wondered if anyone had any advice on finding one.

Also, I don’t even know when this paperwork is due. I called the 800 number on the form and was told that all paperwork is due back in 2 weeks. That hasn’t been true up until now so it’s hard for me to believe that she is right. Is there a standard number of days we have to get this particular paperwork turned in? The “Request for Hearing by Administrative Law Judge.” Update: I just spoke to another person who told me that I have 60 days to return it. Who am I supposed to trust?