The Disability Saga: Part 1

When I left my job in June of 2014, I had no intentions of ever going on social security disability. To me, disability meant a failure on my part– a failure at living the way we were told we had to live, a failure at living the life I always dreamed I would live, a failure at the simpler life I was starting to settle in to when I got sick, a failure at life in general. A failure. In my mind, going on disability was for those who were really sick, and it took me a little while to realize just how sick I really was. I was in deep denial.

I was going through the grief process in a loop (denial, anger, bargaining, depression, and acceptance), over and over. That subject is for another post at another time, because I think many of those with chronic illness get stuck in the grief loop, and it’s rarely if ever discussed.

After running out of time off, I had to leave my job. In the beginning of that year, the head of HR at the company I worked for told me about FMLA (Family and Medical Leave Act). My job had a policy where you had to accrue both sick and vacation days, and I was only accruing 1 sick day every 2 1/2 months, which wasn’t nearly enough for someone who had a debilitating chronic illness that was developing at this time. There wasn’t enough time for doctor’s appointments, let alone days where I couldn’t get out of bed, which were occurring more and more frequently. I had to use days I didn’t have in the beginning of that year, which led to me being written up. That’s when HR called me and told me about FMLA, and told me I could use it intermittently for whenever I needed it — doctor’s appointments, migraines days, days where I was so dizzy I dare not drive, etc. They were unpaid days, of course, but I didn’t care. I was just grateful for the chance to keep my job and go in when I could. By the middle of the year, though, I’d breezed through my allotted intermittent FMLA leave, and that’s when I had to resign from my job.

My thought after I left was that I would find some work-from-home position that was a little more flexible, and maybe even try to be an independent travel agent since I had the knowledge and the experience. I applied to jobs during those first months and tried starting my own travel business, but neither worked out. It was hard to find a job in 2014 that was work-from-home that wasn’t a scam, and I was trying to stay in the field I’d thrived in at my last job. My health was continuing to decline, and my symptoms were starting to multiply daily, making it harder to push myself to keep applying and start my own business.

I still didn’t have a diagnosis of POTS, but I did have the diagnoses of chronic migraines, chronic fatigue syndrome, and fibromyalgia. However, none of those diagnoses really explained the chronic dizziness that was plaguing me 24 hours a day, 7 days a week at this point. I felt like I was on a tilt-a-whirl that I couldn’t get off of. Longer hours were spent in bed, and more days than not were now “rest” days, where I couldn’t do anything but lie in bed or on the couch.

When I eventually got the diagnosis of POTS in November of 2014, I felt relieved. A doctor asked me how I felt to be diagnosed, and I think my response threw him off a little. I told him I felt “jubilant.” Finally, a diagnosis that made sense and explained so many of my unknown symptoms. Symptoms I didn’t even know were symptoms. Finally, a diagnosis that proved it wasn’t all in my head, after being told by a longtime doctor it was. I felt heard for the first time in a long time. I just didn’t realize at the time just how hard treatment and finding doctors who understood it would be.

Every couple of months I’d try a new medication, just to get all the adverse side effects and none of the benefits, making me feel like a guinea pig. Six months after I left my job, with worsening fatigue and increased chronic pain, I finally decided to take the first step for myself after my Cobra healthcare ran out from my job– I got myself Medicaid. At this point, both myself and my parents had outstanding medical debt from all of my doctor’s appointments and testing over the last couple of years. I had health insurance from my job when I worked, but it was horrible insurance that didn’t cover anything, not even bloodwork. It had a $3000 yearly deductible that I had reached in the first month of 2014 because I was trying to get to the bottom of all of the symptoms. I paid it off, using what little savings I had, and my parents struggled to pay what I couldn’t afford to. Medicaid gave me the freedom to finally see doctors without actually having to go into bankruptcy, and it was freeing.

Another six months after that was the one year anniversary of leaving my job. My mind had shifted quite a bit in the past year, and I realized I was in worse shape than when I’d left my job. I’d expected to be on the road to recovery by now, but it was the exact opposite. At least I had a diagnosis to explain some of these mysterious symptoms, but this illness was so unknown to so many in the medical community, and there wasn’t (and still isn’t) a single FDA-approved medication or treatment available. Everything was trial and error, and it was taking a toll on me both physically and mentally.

A family member recommended a lawyer they had used for their disability case, and I decided I needed to call him. My thought process at the time was that I would get the disability and it would enable me to keep seeking a treatment that would work to make me feel well enough to go back to work. A pretty solid plan, but it didn’t go that way.

I met with the lawyer and was told that this wouldn’t be an easy road because I was a young and I was a woman. I didn’t believe just how truly heartbreaking and frustrating this whole process was going to be, though, and I wish I did. I knew I was really sick and that I wasn’t trying to cheat the system, so I just assumed that eventually I’d get approved. The lawyer actually told me that I’d probably be denied the first 5 times or so, but it didn’t make each denial I would eventually receive any less of a blow. After he told me that his wife suffered from a horrible autoimmune disease, I trusted him with my case because I knew he understood hard illnesses, and how women could be treated by doctors. In October 2015, I officially filed for Social Security Disability.

A quick lesson for everyone, because I didn’t know any of this before I applied. There’s 2 kinds of disability, SSDI and SSI. SSDI stands for Social Security Disability Insurance (what I applied for), and is based on the amount of “work credits” you’ve earned. In order to qualify for it, you must have put in a certain amount of years of work based on the age you are when you apply. I had to put in at least 10 years of work, which I luckily had. The amount of money you receive is an average from those past 10 years of work (or however long SSDI requires for your age). For example, my amount will only be somewhere in the $800s per month, because I was a waitress who made a server minimum wage 4 out of the last 10 years of my work history.

SSI is Supplemental Security Income, and are rewarded based on the financial needs of adults and children who are disabled, blind, or have limited income and resources. If you don’t have enough work credits for SSDI, SSI is what you would apply for. The Social Security Administration would review your case every 3-7 years, depending on the nature of your disability. They also check your financial records to make sure you don’t have more money than you’re allowed to while on SSI.
(For more information on the two, click here. There’s a more detailed explanation of SSDI vs SSI on that website.)

It’s important to try to educate yourself as much as possible on the subject of disability, because there’s no Chronic Illness handbook (this is also something I intend to post about in the future, because I think we should write one). There’s no one to help us navigate this world, and some things are impossible to do on your own. It’s the reason I got a lawyer from day 1, because I had enough on my plate with doctor’s appointments, new medications, testing, feeling horrible all the time, and trying to feel better. I knew without a lawyer the stress would be more than I could handle, but I didn’t realize it would be more than I can handle with a lawyer.

I’m grateful for the support groups on Facebook, because there has been some good information given there, but overall it’s not nearly enough. We need people to hold our hands during some of these hard things, and applying for disability (and other benefits, which I’ve never even attempted because I don’t know where to start) is one of them. I hope I can help others someday, after I (hopefully, finally) get my acceptance letter.

The next few months were a waiting game while the lawyer collected all the records from the doctors I’d seen over the past few years. In the early spring of 2016, I was sent a letter to go to a disability evaluation for the claim. I had an appointment with both a general practitioner and a psychiatrist, and their opinions would determine my fate. My lawyer told me to pay attention to how long the appointment with each doctor took; he said it should be a minimum of 30 minutes for each, a bit longer for the appointment with the psychiatrist.

My first appointment was with the general physician. The doctor walked in the room, took my blood pressure, and commented on how purple and cold my feet were (I replied “Yes, it’s from the POTS”). He then read over the list I’d written of my diagnoses to this point. This included POTS, Sjögren’s Syndrome, chronic fatigue syndrome, fibromyalgia, OCD, anxiety, depression, among others. I still hadn’t been diagnosed with Hypermobility Spectrum Disorder/Hypermobile Ehlers Danlos Syndrome or Small Fiber Neuropathy. The doctor read the list, admitted he’d never heard of POTS, and could not even pronounce Sjögren’s (he said something that sounded like Jo-gren), making it evident he’d never heard of that either. The entire “appointment” lasted 3 whole minutes from when he first walked in the room until he walked out. I was stunned. 3 minutes!! How could you possibly determine if someone is disabled or not in 3 minutes? You can’t, it’s impossible. And he didn’t do anything besides take my blood pressure and read off a list of diagnoses.

Next I had the appointment with the psychiatrist, and that appointment at least lasted a good half an hour. She asked me questions about being diagnosed young with OCD, and commented on my fibromyalgia. It wasn’t entirely in depth, but she believed all of my diagnoses, and I felt positive about the visit with her at least.

After these 2 appointments came the waiting game. It took months to hear back, and I was given my first denial. The reason for the denial? None of my illnesses were bad enough to excuse me from not working. Then I read the report from the doctors. The general practitioner pretended they knew what POTS was and said my POTS wasn’t as severe as I was making it out to be (really? He figured that out in 3 minutes? He’d never even heard of POTS. He admitted it was new to him. And he didn’t even check my heart rate! Yet somehow, he knew I wasn’t that ill. Right.)

The psychiatrist was less negative, at least stating that she couldn’t comment on my physical illnesses, but said my mental illnesses didn’t seem as much of a problem as the physical ones. Basically saying, refer other doctor(s). Therefore, I was denied. My lawyer warned me, but it didn’t sting any less. I thought the 3 minute appointment should have been brought up, but he did absolutely nothing with that information, not even at the hearings that were to follow. That’s right, hearings, plural.

After the denial, I was able to appeal it and request a hearing. The date was sent to the spring of 2017, almost a full year after the first denial. Could they drag their feet any more? How do they expect people to pay their bills during all this time? No really, I want to know. How are we supposed to pay our bills, fill our stomachs, and keep a roof over our heads? I was lucky I had my parents, but here I am, over 30 years old at this point, and they have to pay all of my bills because I’m too sick to work– it’s hardly ideal.

During the following months, my lawyer continued collecting any records from doctor’s appointments that occurred in between that period and the hearing. During this time, I tried more treatments and got more testing, including a sleep test, testing of my inner ear and balance, my cognitive abilities and memory, and more. More diagnoses came, and more treatments were attempted. I tried balance therapy for 6 months, just to be told by them after half a year that it wasn’t working and there was no point in continuing. My neurologist’s nurse practitioner was the one who recommended it, and when I went back to my neurologist, he said he could have told me it wasn’t going to work. He said that my dizziness was from my dysautonomia and nothing would fix it. Awesome. Six months wasted.

I even went to a Lyme-literate doctor to once and for all rule out possible Lyme, and that was negative. I went to a geneticist the year before the criteria changed for Ehlers Danlos Syndrome, and therefore was told I wasn’t even hypermobile (FYI, I am pretty hypermobile.) More than a year later, after the criteria changed, I was diagnosed by another geneticist with Hypermobility Spectrum Disorder/Hypermobile Ehlers Danlos. It was all exhausting, but I needed to keep up the grind of trying to get better.

 

Read part 2!