The Disability Saga: Part 2

Make sure you read part 1 first!

The first hearing for Social Security Disability happened sometime in the spring of 2017. I went to the Federal Courthouse and sat in the waiting room to wait for my turn. My lawyer came in, wheeling his briefcase full of my doctor’s reports. His file for me was already thicker than a Stephen King novel (if you know, you know). He gave me a few tips about what to do and what not to do, and warned me that the judge that was assigned to my case did not typically understand complex medical conditions. Wonderful. We went to meet with the judge soon after that.

For Social Security Disability, the judge sends your records to a doctor who has never met with you or spoken to you. These doctors review your records and make an “informed” decision on if they believe you’re disabled or not. The doctors are paid by the Social Security Administration, as are the evaluation doctors I mentioned in part 1.

The judge had given my records to 2 doctors for this case, a cardiologist and a psychologist. A few days before the hearing, I had received a copy of both doctor’s findings, so I was at least prepared for what they would say. In the cardiologist’s findings, he stated that the records showed that I did indeed have POTS, but that he had some questions for me. The psychologist was another story.

She wrote that as per my records with my own psychiatrist, I was going out to dinner weekly with my then boyfriend, had even traveled a couple times over the years, and gone to concerts. She claimed that those things were not consistent with someone who has depression. WHAT?! If you have that belief, you shouldn’t even be a psychologist. Depression looks like many, MANY things, and has many faces. Pulling yourself out of bed once a week to get dinner doesn’t mean you’re not depressed. These doctors had never met with me, or even spoken to me in that matter. It was insulting and infuriating to read the reports, and I was prepared to be even more aggravated at the hearing.

During the hearing, the judge has the opportunity to call the doctors and have them speak their opinions on their findings. From there, the lawyer is able to ask the doctor questions if they have any. At the hearing, we found out the cardiologist was sick and couldn’t be present on the phone. Why the hearing was still allowed to take place then, I have no idea. Since the cardiologist was ill, the judge decided to get a second cardiologist in the mix and ask his opinion. That made me angry, because the first cardiologist seemed to be on my side, admitting that according to my records I did have POTS, and who knows what this second cardiologist would say. He suggested meeting again for a supplemental hearing, and said that I’d get a letter with the date.

Fast forward to what seemed like forever. The next supplemental hearing was I believe in the fall of 2017 or early 2018, I don’t recall exactly (this is a lot to remember for someone with some memory loss from dysautonomia, but I’m trying my best to get the timeline as accurate as possible.) As with the last time, I got the second cardiologist’s letter a few days before my supplemental hearing. This cardiologist was rude and condescending, writing Fibromyalgia in quotes (“Fibromyalgia”) as if it’s a word I made up on a whim. I instantly knew this wasn’t good. Obviously he was among the doctors who didn’t believe Fibromyalgia existed.

At the hearing, he was on the phone, and went on about POTS and how it wasn’t disabling. I was passing notes to my lawyer during this, but he wouldn’t speak up on my behalf. It seemed like he didn’t want to ruffle any feathers since he dealt with this judge on a regular basis. Finally I raised my hand and asked if I could speak, as if I were in front of a teacher. If my lawyer wouldn’t speak up, I had to say a few things myself.

I brought up that dysautonomia was a neurological condition that affected the heart rate, but that is usually treated by neurologists (I’d been to more than half a dozen cardiologists at that point and still never found one that understood POTS. I still don’t have one that does.) My neurologist once told me when I asked him for a recommendation that he didn’t have one, because most cardiologists don’t seem to understand POTS. The judge took that into consideration and then said he would contact a neurologist and schedule a second supplemental hearing. Will this ever end?!

Fast forward once again, this time a year and a half. A YEAR AND A HALF. They kept dragging their damn feet, letting me suffer. Being held back at every turn from life, because I’m stuck in this limbo of adult and child. I would soon break up with my boyfriend of 7 years, and I was feeling worse than ever. No improvement, and now the HSD/hEDS diagnosis I had been suspecting all along. I was 34 years old, living at home, and didn’t even have enough money to pay my own cell phone bill. No prospects in sight. That was my life. I was at my lowest point when I had my third hearing.

In preparation for this hearing, my lawyer asked for new letters from my doctors. I asked my primary care provider and my neurologist, who was my treating doctor for dysautonomia. I also asked my then psychologist, but she refused, stating it was all physical and not mental. How is it not mental? I’m going to her because my depression was worse than I’d ever experienced in my life, and I’d stated that to her multiple times. I told her I was feeling helpless and even suicidal, even though I wouldn’t actually try to kill myself. I was in a deep, dark depression and a pit I couldn’t get back from. My OCD was keeping me up at night, because my racing thoughts were relentless. It was after that doctor refused to write me a letter than I decided my time with her was limited, and I stopped going soon after.

In June of 2019, at my third hearing, I was at my wits end. This had been going on since 2015, 4 1/2 years at this point. I’d known people who had less diagnoses than me (but had POTS too), younger, and had gotten their disability approved right away, and it just wasn’t fair. The system is so broken and what am I supposed to do about it? I’m just one (sick) person who can barely fight for herself.

There I was in the same waiting room that I’d gotten to know all too well, waiting for my lawyer to wheel in his briefcase full of my medical history. He came in, pulled out my file, and needed two hands. He told me I had the largest file that he’d had for any client in his 40+ year history of being a disability lawyer. He also admitted that I was one of his hardest cases, along with just one other.

This time my mom asked if she could come to listen in, and the lawyer said she could as long as the judge approved. When we walked in and asked, the judge said she could as long she kept quiet. This time there was a vocational expert present at the hearing. The vocational expert’s job is to find a job I could perform, anywhere in the country, given my work history and training. That means that even though I live in New York, if there was an open job in Missouri that was within my ability, they’d say I could work. Just expect me to up and leave New York and what, live in Missouri? How very realistic.

The vocational expert put in all of the qualifications I have and narrowed down the results. He found a couple of things I could do, like photocopying (how is that a job that would actually pay the bills?). My lawyer asked him to readjust his findings, based on the fact that I was sick all the time and not reliable. Then he asked the vocational expert what the average office allowed for time off in today’s day and age. The expert said once a month (which I can tell you first hand, is not the case. I got half of that at my last job. One day accrued every 2 1/2 months.) My lawyer asked if I needed to take multiple times a month for being sick and doctor’s appointments, if I’d be able to work. The vocational expert said no, and then he concluded that there were no jobs I could work given all my limitations.

After that, the judge got the neurologist on the phone, and this is where it got….. horrible. The neurologist, who admitted he only looked at the records from one particular doctor (any guesses who?) stated that I had conversion disorder. I didn’t know what it was at the time, but my lawyer later told me it meant he believed that it was all in my head. I listened closely to the neurologist, holding my breath. He said he was good friends with the doctor I had seen in NYC and that doctor was the expert on POTS. Remember this story? I shared it recently, about the doctor I saw who said he was the only doctor in the medical community who believed POTS was not a form of dysautonomia. This man was no expert on POTS, he didn’t even believe in POTS!

I was livid, and yet I had to keep my mouth shut. I was furiously writing notes to my lawyer, so when the right opportunity presented itself, he would (hopefully) ask the right questions. The neurologist went on about how that doctor that I saw would know best, and kept mentioning how he’s good friends with him. He admitted he never looked at the notes from my current neurologist, who is my treating doctor and has been since 2015.

Then he got the psychologist from the original hearing on the phone, who repeated what she’d written. She insisted I couldn’t be depressed if my boyfriend took me out to dinner once in a while, nor if I traveled anywhere, or attended any concerts. She brought up the fact that I went to Jamaica and that I went to Canada, all things that were written in the notes from my psychiatrist.

Just so you get an idea, I went to Jamaica multiple times in a few years with friends before I got sick, and I paid for this trip a year before I went. The trip was paid before I even applied for disability, and despite being sicker when the trip took place, I still had to go. I just took a lot of naps, and had to spend more time in the room than any of my friends. I missed out on being at the pool or beach with them some of the time, just so I could sleep. The trip was in January 2016.

As for the Canada trip, me and my then boyfriend decided to go to Canada for our 5-year anniversary. He drove us to Quebec City, and on the first night there I fell down stairs and broke my foot and ankle. He had to drive me to Vermont to go to a hospital to get treated, and then we went home from there. The trip was cancelled. But all of this brings up the question, are disabled people unable to have a vacation??? Are we not allowed to leave the house to get dinner?? How could this be real life? How was this happening?! How does relaxing on a trip correlate with working full-time? It’s not even remotely the same.

And the concerts? Concerts used to be my happy place. I used to travel all over the country to see my favorite band. I’d go to concerts all the time before all of this started. Now, I went to an average of one or two concerts a year, and I’d spend the week in bed afterwards recuperating.

My lawyer asked no good questions to either the neurologist or the psychologist, and didn’t bring up a single thing I had jotted down. Finally, about to burst, I raised my hand like I did at the second hearing, and asked if I could speak. The judge said that if it was okay with my lawyer, I could, but you could tell he was not happy about it. Since my lawyer wasn’t opening his damn mouth, I let it all spill out. I started crying right away, I couldn’t help it and I didn’t even care. I was angry, aggravated, disappointed, and devastated all at the same time. 

As I was pouring my heart out, the vocational expert was looking at me with such sincere eyes, and kept giving my judge looks that read “What is wrong with you??” It made me even more emotional. I explained how this doctor that the neurologist referred to is going against the rest of the medical community because he doesn’t believe POTS is a form of dysautonomia. I mentioned that there were numerous other people who had the same experience with this doctor, and how dangerous he was because he told all of us it’s all in our heads.

I said my own neurologist wrote a letter about how disabled I am and he would know best, he’s the one who’s actually treating me. I kept crying, saying the reason I go out was because all of my doctors urged me to, saying I had to continue living my life despite all of my chronic illnesses. My doctors urged me to go out to dinner, to travel if I could, go to concerts, and live my life despite my chronic illnesses. I told him that even when I did these things, I’d be in bed for a week to multiple weeks afterwards recuperating. I admitted that most days I spend all day either in bed or on the couch, up to 22 hours in bed. How can someone like that work a full-time job? I’m too tired to do anything most days.

I was ugly crying at this point, bearing my soul. I said I didn’t even want to live anymore, I just wanted to die, and all of this was too much for anyone, and who would make all of this up? I was talking a mile a minute (but they record it all, so they got it all down). I could barely breathe I was crying so hard, and my mom looked like she wanted to jump over and hug me, but couldn’t. Throughout me crying and talking, the judge would not even look up at me. He looked down like I didn’t even exist, and he made me feel that way. Like I didn’t matter an iota. And you know what? I believe that’s how he really felt. He treated me that way. That made me cry even more.

I mentioned all the new diagnoses I’d recently got– HSD/hEDS, small fiber neuropathy, delayed sleep phase syndrome, PCOS, and countless others. I mentioned that I’d even had multiple cancer scares in recent years, including blood cancer. How could I make that up?? He didn’t blink an eye. Dozen of diagnoses at this point, every doctor’s appointment it felt like I got a new diagnosis. The judge was very irritated he let me speak and that my lawyer didn’t stop me, but I was done with my lawyer at that point and I did not care whatsoever.

I asked if disabled people were not allowed to leave the house, if we were not allowed to eat? Do those who “look sicker” not still do these things from time to time? I’d already lost friends due to all of this because I barely ever socialized anymore, and I brought that up as well. Everything that was on my mind came out, and I have no regrets about any of it. It needed to be said. Finally the judge dismissed me and I walked out, hoping it was rudely. I was beyond caring.

Two weeks was all it took to get my 6 page denial letter. My lawyer told me it was obviously pre-written before the hearing, because there was no way it would have gotten out this fast otherwise. The judge went on for 6 pages about how I’m making it up, how I’m not as sick as I claim I am, and how I can work a full-time job, despite the vocational expert stating I can’t. He kept quoting the neurologist who was best friends with the crazy man in the city. I had given the judge a print out of comments from others about how this doctor in the city did the same thing to them, telling them POTS isn’t a form of dysautonomia and telling them it was all in their heads. The judge wouldn’t take any of that evidence; he wouldn’t even read the letter from my own neurologist stating how disabled I am. I cried for a long time after that. He made his decision before I walked into the room.

So what was my next step? I wanted to fire my lawyer. He was a nice man, but way too meek and afraid to rustle a single feather. I needed Saul Goodman. I needed anyone who would stand up for me. I knew I couldn’t though, because of where I was in the process. My mom and I expressed our concerns to the lawyer, and he said he wrote a good appeal letter and to let him do that. I only had a short time to send in the appeal anyway, so I didn’t really have any other options. Social Security does not give you enough time to do what needs to be done, meanwhile they dragged their feet, making this go on for years.

So, I kept the lawyer on and gave him one last chance. He wrote a letter to the Court of Appeals, stating how wrong the judge was to come to that conclusion for multiple reasons. One of them being that the vocational expert stated there wasn’t a single job I could do given my limitations. Along with that, he wouldn’t even read the letter from my neurologist stating how disabled I am. I wanted him to bring up the fact that he was only making his decision based on POTS, and I had over 50 diagnoses at this point. Why weren’t any of the other chronic illnesses being brought up? But he said I didn’t have enough to back those up, so he didn’t mention it in the appeal letter.

After the letter was written and sent, I waited. I’d gotten used to it at this point. That was in June of 2019. The lawyer told me that the average wait time was 15 months, but after COVID started, it was pushed back even further. Finally, in August 2020, I got a response back from the Court of Appeals stating they were denying even re-opening the case to look into it. Cue more sobbing. I’m surprised I had any tears left, and a lot of time in recent years I have lost the ability to even cry.

When I got this denial, I obviously fired my lawyer. Well, I had my mom do it, because I couldn’t. I had enough stress, I couldn’t even think of it. I had my mom help me find a new one too, because I was only given a short period of time to make my next move. We called multiple lawyers, all of which either didn’t call back or told us they had no interest in getting involved with an ongoing case. My old lawyer recommended one man, but I didn’t want to use someone recommended by the guy I just fired. After calling a dozen lawyers and every single one telling me no though, I had no choice. The clock was ticking and I had to send in my next appeal.

I hired the lawyer my old lawyer recommended, but I’m not at all confident. The new lawyer warned me there’s a good chance I still won’t get it. I brought up all of the other chronic illnesses again, and he said I didn’t see enough doctors about those. I had just gotten diagnosed with Hypermobility Spectrum Disorder/Hypermobile Ehlers Danlos Syndrome shortly before my last hearing, there wasn’t enough time to get proper treatment. Plus, there’s not even much treatment for these illnesses! I’ve been to 8 physical therapists in the recent years and not a single one has been helpful. Most of them were before I even got a diagnosis. That doesn’t mean I wasn’t treating the same chronic pain, it just means I didn’t know why I was having all of this chronic pain.

HOW is all of this possible?? I am not scamming the system. I am a sick woman who spends almost all day everyday in bed. I barely leave the house for anything but doctor’s appointments. My (new) boyfriend of a year and a half gets aggravated sometimes because he wants to do more, and I never feel well enough. He says he understands, and I know he does, but I also know how disappointing it can be. Even for grocery shopping most of the time. On my good days, I do all I can. I try to enjoy anything I can when I can. A few times a year I go out and try to do more, but I am far from well enough to work a full-time job, or even a part-time job. It’s only gotten worse since the pandemic started, because I had to go so long without doctor’s appointments, I stopped medications that maybe were helping, and one of the only doctor’s that was helping me with my chronic pain left and no longer takes insurance. Doing this blog is even a lot for me, but I am able to write at my own pace, and saving drafts on the blog and on social media makes it easier for people like me.

So that’s what’s going on with my disability case. I am 6 1/2 years in at this point, and I’m in the court of appeals hoping and praying they’ll even look at my case. What else can I do at this point? My friends tell me to go on a TV show, as if it’s that easy, or they can even do anything. I can’t even get attention to it. I probably won’t even be able to get people to read this blog post, beyond the few that I know personally.

I don’t know what else I can do, and I’m running out of options. If I get denied again, I think that’s it? I don’t know exactly, but what if that’s my last option? I can’t just re-apply and start over, because I’m counting on the money from the last 6 1/2 years. You get retro-pay from when you first applied, and I need that to live. Not only do I need it, but my parents need me to get it. They can’t afford to keep paying for me. They’ve never had a lot of money, and they’ve worked so hard all their lives. They’re 70 years old and without pensions. My mom has Rheumatoid Arthritis and other chronic illnesses as well, and my dad has arthritis, diabetes, and other things too. I know the stress of all of this is hurting them just as much as it’s hurting me, and I want more than anything to give them a little ease.

I’m so worried about them, and spend all my hours worrying. I would do anything for them, and owe everything to them. Imagine still having to support your 36-year old daughter? You’d never expect that. It’s not fair. Even if I ever get approved, I’ll need to be supported, because the $800 a month from SSDI will not support me.

I live on Long Island, where average rent is about $2k a month for a basement apartment or studio, and don’t get me started on houses and taxes. What can I do, move? I’ve considered it. But my support system is here. My parents. My family. My friends. My doctors. My health insurance. I can’t just live anywhere. If I do move, there’s a lot more to consider than the average person has to consider. Do they have good hospitals? Do they have doctors who understand my 50+ conditions? Can I tolerate the temperature? It can’t be too hot. It can’t be too cold. I feel like Goldilocks.

This is the first time I’ve ever shared the full story. I think most people assume I’ve gotten approved for disability a long time ago, because most people have by now. I’ve read hundreds of stories over the years from others in the Facebook support groups I’m in, and I’ve never seen anyone else have to wait so long. If anyone has any tips, please let me know. I don’t know what to do anymore, I’m at the end of my rope.