Upon Review, I am Still Disabled

The Social Security Administration Logo.

“We recently reviewed the evidence in your Social Security Disability claim and find that your disability is continuing.”

I let out a huge sigh of relief when the letter containing those words arrived in the mail, and then the tears started flowing. I knew I was nervous to receive this determination, but I was still surprised by the magnitude of the release and the sense of a weight being lifted off my shoulders.

In a March 19, 2026 letter from the Social Security Administration (SSA), which I received in early April, I was notified that my Social Security Disability Insurance (SSDI) benefits were about to undergo a “Continuing Disability Review.” I had been anticipating this review for a while, but still managed to feel a bit caught off guard.

My official date of disability was June 22, 2019, and I first applied for SSDI benefits in January 2020 but was denied. It took 15 months, until March 2021, for my appeal process to be completed and approved. A story for another time. Ever since, I’ve received monthly benefit payments and Medicare coverage without any issues. An arrangement I never take for granted.

I always wondered if I would hear from the Social Security Administration about a review after three years, or five years, or even ten years. And which date would they use to mark the occasion? Almost exactly five years after my first approval date, I received this letter in the mail and began the Continuing Disability Review process.

Continuing Disability Review, Form 454

The first letter I received was Form 454, the Continuing Disability Review Form. It said that the completed form was due back, either by submitting online or by mail, about a week after I received it. The stakes felt too high to rush through it, so I spent hours poring over the questions, across several days. I was asked to provide all of the following information:

Permission to release my medical records to the Social Security Administration.
A contact person who could help with my case, if I was unable to.
A list of my medical conditions.
A list of medical providers that I had seen in the previous 12 months.
A list of every medical test I’ve undergone in the last 12 months.
A list of current medications, who prescribed them, why, and what the side effects are, if any.
A list of Assistive Devices I use.
“Other” Medical Information.
Work information, if applicable.
Support Services, such as vocational rehabilitation, employment or other support services to help return to work, since my last disability decision in 2021.
Training, such as specialized job, trade, or vocational training since my last disability decision in 2021.
Education received since my last disability decision in 2021.
A section on daily activities, where I was asked to identify which activities of daily living my medical conditions cause me to have difficulty doing and then to explain the difficulties completing each of the selected tasks.
Finally, there was a section for Remarks, which I used to provide additional information and clarification about how my autoimmune sensory neuropathy, which is the specific condition for which I receive the SSDI benefits, has affected my life and how it continues to do so. I outlined what has changed over the past five years and what has remained the same.

I typed out 11 medical conditions, 23 medical providers, 26 medical tests, and all the physical impacts of neuropathy, from walker, cane, and mobility scooter to modified activities of daily living. I labored over every detail of the form and held my breath as I clicked the “submit” button online on April 12^th.

Medical Provider Outreach

Within a few days of submitting Form 454, some of my medical providers told me they heard from the Social Security Administration. They were asked to submit a form of their own about my case, and they too were given a short timeline. As far as I can tell, not all 23 medical providers I listed received outreach from the SSA.

Based on who told me they heard from them, which is probably not a complete list, my best guess is that they only reached out to those who treat me for some aspect of my neuropathy. My cardiology team, for example, seems to have been spared from the paperwork.

My nerves were heightened, however, by one of the providers who was asked to complete the form. They told me that, the way the SSA’s questions were framed, it almost seemed like they were trying to “get” the SSDI recipients. To catch them in a lie and call them out. I did not see the form personally, but that account came from someone I trust. I’m sure there are people abusing the system, and I can understand why the SSA wants to weed them out, but it’s not the majority.

Function Report, Form 3373

About a week after I submitted Form 454, I received another letter from the Social Security Administration in the mail. I got my hopes up, thinking it was a quick and positive determination letter, so I was disappointed to discover it was just another form to fill out.

This was Form 3373, a Function Report for Adults. At first glance, I could see that this 8-page report would take time to complete, but the deadline for submission was only a few days away, and I was in the middle of a week already packed with appointments. I called the local SSA office to request an extension of one week, which I was granted. Form 3373 consists of the following:

Section A is for General Information, such as name, phone number, where you live, and with whom.
Section B is Information About Your Illnesses. How do your illnesses, injuries, or conditions limit your ability to work?
Section C is Information About Daily Activities. Describe what you do from the time you wake up until going to bed. Do you take care of other people or pets? What were you able to do before your illnesses, injuries, or conditions that you can’t do now? Do the illnesses, injuries, or conditions affect your sleep? This section also covers personal care, including how your illnesses, injuries, or conditions affect your ability to take on activities of daily living, such as: bathing; dressing; using the bathroom; taking meds; preparing and eating meals; doing house and yard work; getting around; shopping; handling money; etc. It also inquires about your hobbies and interests, social activities, and whether or not those activities have changed since your illness, injury, or condition began.
Section D is comprised by Information About Abilities. A checklist of physical and mental abilities that your illnesses, injuries, or conditions affect, how, and why. How far can you walk? How long can you pay attention? How well do you follow written or spoken instructions? Do you finish what you start? How well do you get along with authority figures, and has an inability to do so ever cost you a job? How do you handle stress or changes in routine? Have you noticed any unusual behavior or fears? Do you use any mobility devices? If so, which were prescribed by a doctor, and when? And when do you need to use these aids? Do you currently take any medicines, and what are their side effects?
Section E, the final section, is another space for Remarks. I used that space to reiterate the impact that my autoimmune sensory neuropathy has had on my life and my ability to work.

Some questions overlapped with Form 454, but I spent a few days writing everything out anew and nervously clicked “Submit” on Form 3373 on April 25, 2026, ahead of my extended deadline.

Waiting and Wondering

As soon as the form was submitted, my disability imposter syndrome showed up in full force. I look and seem a little better than I did when the autoimmune sensory neuropathy first began, so what if I really didn’t deserve the benefits anymore?!

I knew that was ridiculous, and several doctors and my therapist said the same. One doctor went so far as to ask “When does the SSA think you would have time to work a full-time job? You spend most of your time going to doctor’s appointments!” [That’s true: check out my Chronic Illness Time Sheets on Notes]

I also worried about the financial ramifications of not receiving SSDI benefits anymore, if they were to be denied, and what I would do about health insurance if my Medicare coverage was revoked. Under the current U.S. administration, people with disabilities are disregarded, and I feared that this review process may just be a way to cycle out beneficiaries, even if they were deserving. A fear I didn’t have under the previous administration.

In late May, I called the local SSA office again, to see if there was a timeline for a decision, or if I might expect to receive additional forms. I was headed out of town for three weeks in June to meet my baby nephew, and knowing what a quick turnaround time the SSA expected, I didn’t want to miss out on any required materials in my absence. They were unable to provide a timeline and recommended that I periodically visit their online portal for updates while I was away; it wouldn’t send me a notification, so it was up to me to check. I added it to my calendar for every Friday of the trip.

A Positive Outcome

As fate would have it, I didn’t need any of those reminders. On June 8, 2026, three days before leaving for the trip, a new letter from the Social Security Administration arrived in the mail. It was the positive determination letter I had been awaiting!

I am incredibly grateful to still be receiving these benefits. Financially, it isn’t much, but it is enough to alleviate a family financial crisis so that I can keep prioritizing my health, rather than work. Most importantly, this decision allowed me to keep Medicare, which, having experienced it, I think we should all have.

The Continuing Disability Review process itself was manageable, in the end. Given the weight of the decision, it felt like an appropriate amount of paperwork and a reasonable time frame of less than three months from start to finish. But the emotional burden felt heavy.

I hope someday that I don’t need these SSDI benefits anymore because my health has improved to the point that I no longer fit the description to receive them.

That may happen.

It may not.

In the meantime, I’m relieved that the Social Security Administration was able to correctly assess that I still qualify.

Subscribe now

Each issue of “What’s Her Problem?” includes questions for further discussion. Leave a comment below!

This week’s questions:

If you receive SSDI or other government benefits, have you undergone a review process? Was yours similar? What was the emotional component of it like for you?

Debra Rafson