Typical pulling of the neck posture for many with Cervical Dystonia
December 1 was that day. Having applied for Social Security Disability 2 1/2 years ago and being denied my first two claims, the date of my hearing before a federal judge had finally arrived. I had been completely stressed out about it for months. How do I show these people how painful it is to live with Cervical Dystonia? What if my neck tremors don’t look as bad as they usually do? Would I look disabled enough? Should I skip taking my meds so the judge can see what it really looks like to be me? All of these questions and more played on a reel through my mind, over and over again.
I did everything I could to prepare, thanks to the help of a friend who works for a living with people applying for SSD, in addition to a couple people from my Dystonia community who have been through this process before. First, I contacted Senator Franken’s office, since he had written a letter a couple years ago to the Social Security Administration, asking them to add Dystonia to the list of approved disorders. Unfortunately, his staff knew nothing about the letter, and they were not helpful in the least. So I contacted Representative Ellison’s office, and they told me they would issue a Congressional Watch. This means that the SSA can see that my Congressional representative is watching the progression of my case. I was also grateful to have 2 people write letters on my behalf, describing how my Dystonia negatively impacted my ability to continue working as a teacher and how it affected my daily life. And then I wondered about my lawyer.
What kind of access would I have to the one person who was in charge of showing the judge why I needed to be approved for Social Security Disability? As it turns out, the norm for people who make it to this point in the application process is for you to meet with your attorney 45 minutes immediately before the hearing. That’s it! To avoid ruminating on all of the unknowns, I called my attorney at the beginning of November and asked her to talk me through the hearing so I’d know what to expect. I needed something to help me manage my fears. The planner in me is always struggling when I don’t know what to expect. Guess what? Even with all the planning, that’s exactly what happened.
As soon as my attorney and I sat in front of the judge, with the vocational and medical experts sitting to our right, he said, “Your neurologists wrote that you have a Somataform Disorder.” What in the world was that? “Have you ever heard this before?” he asked. Shaking my head in confusion, I replied, “I have no idea what you’re talking about, Sir.” “This must be why we’re here,” he concluded. It was already going downhill, and I had no idea why.
Completely caught off guard, he spent nearly an hour focusing on questions based on my pain psychologist’s notes. He knew everything that happened in my life, it seemed, on a daily basis. I had no idea that therapist’s wrote down every single thing you say. Of course, I had nothing to hide, but why wasn’t he asking me about any of my physical symptoms or about anything written in the notes of my team of doctors who have been treating me since I was first diagnosed with Cervical Dystonia? After a grueling 75 minutes (apparently, the norm is 30 minutes for a hearing), my lawyer and I left the room.
“What does Somatoform Disorder mean? I don’t understand why he was asking me about that,” I immediately asked my attorney as we debriefed.
“It means psychological. But don’t worry. My colleague and I were talking the other day. If you’re in pain, it shouldn’t matter why you’re in pain,” she replied.
What?! Being in a complete state of shock, it took me the rest of the day to fully process what had just happened. If you look up the words “somatic” or “somatoform disorder” anywhere on the Internet, it says “the equivalent of a hypochondriac; it’s all in one’s head”. I truly couldn’t believe it. I never would’ve dreamed my judge would have such a skewed interpretation of my health. My fate was decided before I even entered the hearing room. While my neurologists later wrote letters to the judge explaining that their diagnosis actually meant I would need more medical care and that it’d be even more difficult for me to work, there was nothing else that could be done.
I was angry at my neurologists for writing a diagnosis in my medical notes that they admitted is commonly misinterpreted, while never bothering to talk to me about it. I was frustrated with my lawyer because she didn’t think it was important to bring those notes to my attention prior to the hearing. I was frustrated with the judge for only focusing on my therapist’s notes and those of two neurologists whom I hadn’t even been going to for six months, rather than the specialists who have been treating me for years. Aside from asking my lawyer a few questions about why she didn’t address this “red flag”issue with me, asking if she thought it would help to have my neurologists explain what their diagnosis meant, and having them write that letter, there was nothing else I could do.
For me, letting go of all my frustrations was a huge feat. But I had to. I knew I had done everything I could to advocate for myself. And since it takes 2-3 months to find out the judge’s decision, I couldn’t keep me head in a space of grieving because the stress of it all would continue to exacerbate my migraines, my neck tremors, and my chronic pain. So now I have to wait.
I’ve heard that most people who go through this whole process of the initial claim, appeal, and hearing date are rejected the first time. That whole process has taken almost 3 years for me. I guess the government wants to see who truly qualifies for Disability and which people just don’t want to work. I can understand that to a certain extent, but you’d think the fact that I have a team of 6 doctors would have some bearing on my case. If I was someone who was partying all night and trying to scam the government, I’m pretty sure I would not be surrounded by the group of specialists I’ve chosen to help me manage my pain in the best way possible. As I’ve written many times in the past, it also doesn’t help that most doctors have never heard of Cervical Dystonia. So from the beginning when I first started filling out the paper work for the initial claim, I had people denying me left and right because they aren’t familiar with this neurological movement disorder. What a frustrating experience!
I was so grateful to have my parents take me to the hearing; it helped to know I’d have them there for support when it was over. Being able to think aloud afterwards with them so I could figure out the chaos that had just ensued was invaluable. When I got home that day, I had a message waiting on each of my phones, both from a good friend. It was heartwarming to hear her soothing voice and her concern regarding my hearing. While many things haven’t gone as I’ve hoped throughout this drawn out process, the support I’ve received from various people has been so welcome.
MY HOPES: I hope you never have to experience a Social Security Disability hearing for yourself. But if you do or someone close to you does, I highly recommend asking your doctors to show you their notes so you’re not caught by surprise. I don’t even know if it is possible to get these notes, but it doesn’t seem right that everyone but the person “on trial” gets to see what is written about you. My unfair hearing could’ve been prevented if I’d been able to read these notes and talk to my neurologists beforehand about their additional diagnosis. Then I would’ve been prepared from the beginning.
I also hope that you won’t give up if you are ever in this situation. If you truly can’t work, you can’t let the hoops they make us jump through for years at a time deter you from applying for what you need. For me, now that I’ve been through the whole process once, I have so much more knowledge about a flawed system than I ever would have if I had been approved right away. My hope is that I will be approved for Social Security Disability in the very near future. If I get approved by the judge who made false assumptions about my case, I will be thrilled. Yet, I now know how to be a stronger advocate for myself, whether I have to do it all over again or not. The knowledge I’ve gained is priceless because I’m better prepared to help others with their own battles. And that’s exactly what this is. We have to fight for ourselves because, when it comes right down to it, we are the only ones who can.