Warning for discussion of mental health issues and symptoms, including panic attacks, self-injury, and suicidal ideation.
Read the Series:
- Social Security Disability Application Part 1: Filling Out the Forms
- Social Security Disability Application Part 1 Update: Your Questions Answered!
- Social Security Disability Application Part 2: The Doctor Evaluation
- Social Security Disability Application Part 3: Winning the Hearing
My Social Security Disability hearing is held via phone. It's a strange form of gift from covid, which to date has otherwise only taken things from me like family and friends.
The hearing comes eight months after my evaluation by the doctor. The good news, in my case, is that the company helping me expected the rejection. They didn't tell me that before I got it, which is a warning I and my resulting panic attacks and thoughts of suicide would've appreciated. But what they did do is immediately file an appeal once they got the copy of the rejection at the same time I did.
So the paperwork was filed and next steps taken before I even had the courage to ask what next steps would be. There's more paperwork for me to fill out: things granting permission for my doctors to share my records yet again, things saying that I approve of the appeal request, and so on.
I'm told that there is a waiting period. Much like the rest of the process, there is always a waiting period. You wait for things to happen. How you are meant to feed yourself and pay for a place to live in the meanwhile if you are without savings or help is a mystery.
You wait to find out if they'll listen to your appeal. Then you wait to find out when your hearing will be, because the hearing is the third step.
Normally the hearing takes place in person. Since part of my problem is agoraphobia that would have been close to impossible for me, if not fully so. But, as I say, covid does me a solid. There are no in person hearings. At the time of my hearing, there wasn't enough video conferencing technology set up to make that the commonly chosen option. So I'm asked if I mind if my hearing is by phone.
In general I cannot do phones. Phones trigger my anxiety. My short term memory issues become an acute problem as I need to listen to someone and remember what they said in order to reply to it. I can't see facial cues to help understand what's being said and what it means. People working form home means that often phone connections aren't the best and I frequently have to ask for people to be patient, to please repeat themselves, and often end up giving up in tears and frustration when I still can't hear or process what they said.
But a phone call is infinitely better to me than having to go in person, so I say yes. At least this way I can be safely in my home, in my bed, in my pajamas, and can hide under my blanket when the call is done.
The appointment is booked. I put it on my calendar and do my best to try not to think about it in any way whatsoever. If I do I'll just have more panic attacks, and my regular day to day life gives me enough of those already.
Two people help me get ready for my hearing.
The first is a kind soul on Twitter. I'm not mentioning names because the conversation was in DMs and I don't want to violate any privacy. But they heard I was going to go through a SSDI hearing and offered to share their experience.
They walk me through a few things to help me out. The key takeaway is be brutally honest.
Not as in "don't lie" though of course that's true as well. But rather as in we are so often quick to deny how bad off we are to others and to ourselves. In the hearing we can't do that. We have to air every dirty secret, everything we're too ashamed to admit is true of how we are living. Be detailed, be specific, be complete.
The company helping me puts me in touch with a lawyer representing me. I don't get to talk to her until the day before my hearing, which isn't great for my anxiety. But perhaps it's for the best that it happens so soon because then neither she nor I will forget our conversation. It can be fresh in our minds when we're talking to the judge.
She gives me the overview of what will happen and walks me through all of the questions I'll be asked. It's here that I'm grateful for the advice I was given because when I start to answer questions I feel my mouth start to shape falsehoods and denial: it's not that bad. I'm not that sick. I'm a semi-normal person who can feed and clean her home and herself properly, really I am.
I don't want to be judged. But, well, I'm preparing to tell a judge my story.
So I feel the gentle lies start to form and push past them.
When the prep call is over I feel like all of my skin has been ripped from my body. I'm an open wound with no protection. But it's what needs to be done to plead my case.
If I could summarize this into solid advice for others going through it, it would be to stress honesty and specificity. For example, when I'm asked about why cooking is difficult for me I don't simply say it triggers my anxiety. Instead I explain how hard it is for me to remember steps, to focus, to do more than one thing at a time, and so on. Not just what is a problem but why it's a problem.
Going over this with the lawyer helps me because she tells me the questions and I not only practice answering with her but I can take notes on what she asks and what I want to say. After our call I rewrite the notes, adding in things I forgot during the call, and I keep these notes handy for the hearing.
The thing to remember is that Social Security is trying to see if you are able to work in any way whatsoever, so the more details you can give them about your particular situation will help. "I have anxiety" isn't useful to their decision making. "My anxiety affects my ability to concentrate for more than 20 minutes at a time, to focus on one task, to deal with any activity which is on a timer" and so on is.
The hearing is first thing in the morning. I have my phone, my notes, water, tissues, and my service dog with me.
There are four people on the call: me, my lawyer, the judge, and a vocational expert.
The call starts with swearing people in (I raise my right hand when asked even though only my dog would know if I truly did or not). There are strict reminders that there be no recordings of the call. The judge even says that devices such as Google Home or Amazon Alexa must be taken out of the picture. In my research later I find out that this is to preserve the privacy of the hearing, given that it's about my medical information.
Next is paperwork. Some of my doctors haven't submitted copies of my records yet. As my lawyer and the judge talk about it I get the impression this is not an uncommon occurrence in these types of hearings. The judge sets a deadline of a few weeks later for all of the paperwork to be submitted and it sounds very normal and not a big deal.
My lawyer then makes a case for me. She talks about my symptoms and my history and why I am unable to work. For evidence she submits not only the doctor records that we have and which will come in later but also the results of the evaluation that I had months prior.
This is when I find out that the doctor who evaluated me wasn't the one to say I could work. Because I'd been rejected I'd assumed that he'd been the one to take in my self-injury and breakdown during the meeting and proclaimed me still fit for working. Turns out I was wrong. He'd put all of that into my results as evidence of how bad off I am. It'd been Social Security itself which had rejected me, not him.
After the hearing, when I'm more coherent, I send him a mental apology for all the times I'd mentally cursed him out. It's only fair.
When my lawyer is done presenting my case it's my turn. The judge asks me questions and for the most part they are the same questions that my lawyer prepped me for. Leading into it I ask the judge to please be patient with me as I need to use my notes to help, and apologize in advance for how I'll need to ask her to repeat things for me and how I am probably going to end up crying and unable to speak from time to time.
The judge is very patient and says not to worry about it. As I tell her my story I do start crying (which she can hear) and self-injuring (which she can't), and she is indeed kind about it. Later on I find out it's not uncommon for people in my position to break down crying during these hearings. In a way it's nice to be normal about something.
As with the lawyer the day before I am brutally honest and as detailed as I can be about my symptoms. The judge asks for more details on some things. Some are obvious work capability questions, such as did I ever have a job which required me to lift heavy objects? Others are related to my health.
The ones which surprise me are the questions about my migraines. Going into this whole process to my mind my migraines, though chronic, were what I considered bad but could be worked around with accommodations. The thing which made me go on disability leave was my mental health.
Thus, to my mind, the only thing that mattered was my mental health. However the judge wanted details on the migraines too: how bad were they? How frequent? How often did I end up needing to work from home because of them? How often did I end up calling out from work?
(Luckily I use an app to track my migraines so I had the information handy.)
I answer all of the judge's questions as best I can through tears and all, and then my turn is done. I don't get to speak again for the rest of the hearing.
Next is the vocational expert. Based on his voice he sounds like the sort of person Central Casting would send if you requested an actor to play the part of a middle aged middle management person who has done his job a thousand times before and while he doesn't hate it, it's very much something he does on autopilot.
His role in the hearing is to suggest jobs that I could do. The thing to bear in mind with Social Security Disability is that they are not attempting to see if you can do your former job but rather any job. Doesn't matter if you've done that type of job before. Doesn't matter if it's a job you want to do or if it's a job that is even hiring at that point in time. All that matters is if it is possible that you can do it.
Though I can't see what he's reading off of it's clear his testimony is based off of some kind of chart or database. He talks about my illnesses and the agreed upon limitations of them and then suggests a job based on a list of known job types available in my state. For example: I have a difficult time being around people. Therefore I could possibly work in a warehouse or a mailroom doing some kind of task where all I do is sort and move things and not have to talk to anyone but my manager.
When I hear this I start to panic. What I want to do is say no, I can't do that job because I can't leave my home without fear. Agoraphobic, remember? I'm pretty sure warehouses don't let you sort things via Zoom! Plus there are still people, plus sorting things requires concentration, and and and and -
But it's not my turn so I can't say anything. I'm also muted so couldn't interrupt even if I tried.
Instead the judge and my lawyer are the ones to ask questions. They don't bring up what I would have - again, the agoraphobia - but they do ask for more details on the suggested jobs. For example the judge asks the vocational expert how much sick leave would be considered acceptable at a warehouse job like the one he's suggesting, and how much patience would a typical manager give someone with my concentration issues in terms of learning how to do tasks.
The answers to the questions are, to my mind, mixed. On some things he admits that no, the job would not allow what I need. On others he says that it probably would. There isn't enough of one or the other for me to even guess how this is going. All I can do is sit and listen.
Once the vocational expert's time is done the hearing is more or less over. We have the few weeks to get the final paperwork in and then in sixty to ninety days they'll send out the decision.
Again: no idea how anyone manages to wait that long without any financial help to hold them over.
The lawyer calls me after the hearing to touch base, which I didn't know she would do. She assures me that the hearing went really well, as well as it possibly could have, and the only thing left is to hope the judge does the right thing.
She's more optimistic than I feel and I appreciate that. I thank her for her help and patience with me.
I spend the rest of the day curled up in bed. The stress of the hearing means that I spend the rest of the week knocked down by migraines.
But at least step three is over. All that's left is to wait.
Three months later I get the results in the mail. I'm sick to my stomach when I see the envelope waiting for me. I gather my courage and rip it open before I can panic too much to ever touch it again.
I see the result and...
It's actually not clear at first that I won. Turns out that the wording on SSDI designations is rather confusing. The words I see are "Notice of Decision - Fully Favorable."
This means nothing to me. Fully favorable to who? To the government? Fully favorable that I am capable of working and thus not their problem?
Even skimming the more detailed explanation doesn't help. I end up having to go to google to ask what fully favorable means.
Turns out it means I won. They agree that I'm disabled.
Which, as many of my friends point out, seems like a strange thing to be grateful for but at the same time it's everything to be grateful for. I'll be getting help. I don't have to pour so much of my energy into fighting this application process anymore or panicking about where money will be coming from. I can do what I need to do, which is focus entirely on my health and trying to get better.
Grateful doesn't even begin to describe it.
Afterwards I'm able to deduce what happened and what the process was really like. Perhaps this is not true in all cases but it was in mine.
Step One: Application. Instant rejection as most people get.
Step Two: Doctor evaluation. The doctor confirms that I have the symptoms that I and my doctors say that I do. This goes to a vocational expert who compares my symptoms to a chart of possible jobs. If there are jobs someone with my symptoms could possibly do the system considers me capable of working. Ergo: rejected.
Step Three: Hearing. This is now about me. It's not what someone like me could do but what, specifically, I can do. Sure, in theory somebody with my symptoms could do a warehouse job but could I do a warehouse job?
This is when the specifics come in handy. As I read through my determination paperwork I can see how each thing that came up has a point or counterpoint. It's the dialogue between the judge and the vocational expert again. Would the job allow this? Yes. How about this other thing? No.
What worked in my case and gave the determination is each specific, detailed symptom (again, not "anxiety" but "which results in difficulty concentrating, etc.") created a sort of Swiss cheese barrier. Sure, on some symptoms a "yes" answer got through an opening, but enough "no" answers built up over different questions that the end result is that no possible job made it all the way through. For example, yes a warehouse job could be one in which I didn't have to deal with a lot of people, but no that job wouldn't allow for the light and sound related accommodations that my migraines require me to take.
Ultimate answer: no job would have me. I'm officially disabled.
There is a profound relief that comes with the designation. There's a psychic weight lifted off of my shoulders that I've been carrying since the first day I went on disability leave years ago. The issue isn't settled. I and my doctors will be asked to provide proof and paperwork for re-evaluation at some point in the near future (I'm told it's normally a year but also that the administrative backlog is such that it can be longer).
And of course the benefits aren't huge. It's barely enough to live on. But I can live on it. I can stop worrying about if any money is coming in. I can make my full time job be my health and trying to get better so that maybe some day I can have an actual full time job again. These are all good things.
There's also a hard clarity that comes with it. It strips you of that denial you had. I'm not that sick. I'm not that far gone. I'll get better any day now! Any second!
I'm bad enough that even the government said I was bad. That's... not good. As it were.
Still. It's a realization I can work on with my doctors, Which I can do thanks to my disability designation.
So not great but still pretty good.
I can work with that.