We all know people we’d consider hypochondriacs, people who become sick at the slightest suggestion that someone else has an ailment. And perhaps they’ve been judged by myself or others. “It’s all in their heads,” we say. I never thought that statement would be used to refer to me. But last December 1, there it was.
If you’ve been reading my blog, then you already know how surprised I was at my Social Security Disability hearing when the judge said, “So I’m guessing we’re here because your neurologist recorded that you have Somatoform Disorder.” I shook my head in confusion. “Do you know what this is?” he asked me. “I have no idea what you’re talking about,” I replied. Unfortunately, my hearing ended before it began, without me even knowing why. It wasn’t until my attorney and I went into another room to debrief after the hearing that she told me what somatoform means. “It’s psychological.”
I was completely taken aback. If that was in my medical records, why didn’t my neurologist or his fellow talk to me about it? For that matter, why didn’t my attorney bring it up before the hearing? In fact, how could a neurologist who had only seen me 3 times tell me that my Cervical Dystonia was all in my head? None of my doctors suggested that I see a neurologist. I asked my Physical Rehab. doctor who has been treating me since my diagnosis six years ago if there was someone he recommended. At the time, it seemed appropriate to recruit a neurologist for my care team since I have a neurological movement disorder. How wrong I was…
After the hearing, I sent a message to my neurologists, sharing my confusion about their notes in my records. The fellow responded and said the diagnosis wasn’t what most people thought it was. So I asked him to write a letter to the judge to tell him exactly what they meant.
“I explained to Ms. Shaw that somatic symptom disorder does not mean someone is ‘crazy’ or ‘faking’ and that she has real symptoms that effect her life in profound ways, and that in fact this diagnosis carries with it a much higher level of disability than merely a diagnosis of cervical dystonia. I explained that people that are not familiar with the diagnosis of somatic symptom disorder may misinterpret this disease as something that she is choosing to do and can just stop doing it at some point which is not true and not at all what we believe about her.”
Incredibly, not one part of the letter defines what the disorder actually is. When I spoke with my referring doctor about this shocking diagnosis, he said, “I would never make that diagnosis. It’s very damaging and should never be used with someone who has a movement disorder.” In the section you read, even the doctor who wrote the letter acknowledged the fact that everyone misinterprets it. Then why would you write that diagnosis in someone’s medical records?
Those 2 words, “Somatoform Disorder”, created an unfair hearing and caused irreparable damage for me. Perhaps, they’ve affected some of you, as well.
As I get to know more people with Dystonia, I’ve learned that this diagnosis is quite common and a problem that has plagued the Dystonia community for many years. One person said, “I bet if we asked all the members of our Dystonia support group how many of them had been told at one time or another that it was all in their heads, 90% would raise their hands.” Now that’s crazy! Not only do many of us have to struggle with all of our symptoms on a daily basis, but we also have to prove that we truly have a neurological movement disorder? When my symptoms began almost six years ago, I had never even heard of Cervical Dystonia. It took a couple months before a neurologist at Health Partners made my diagnosis: Spasmodic Torticollis (a.k.a. Cervical Dystonia). So how would I even know which symptoms to act out if it was all in my head?
I still remember that first symptom like it was yesterday. There I was, driving home on Interstate 394 when suddenly my head drooped. Quickly, I had to lift it back up with one hand and hold it up until I got home. Then there was the day when I was lying on the floor at my school, my head spasming back and forth uncontrollably, as my four colleagues watched me from above with concerned looks in their eyes. You cannot make this stuff up. Yet, I’m discovering that many doctors believe it’s “all in our heads”. My neurologist who caused all the trouble to begin with also has Dystonia, so why on earth would he use such a damaging diagnosis? It’s teaching me how ignorant the entire medical community is about every kind of Dystonia, and we’re the ones who have to fight to make it right.
MY HOPES: My hope is that a nonprofit specializing in Dystonia will go into clinics, hospitals, and medical schools to teach all areas of the medical community the facts about Dystonia. This includes quality instruction on why it’s necessary for them to remove the words “Somatoform Disorder” from their vocabulary.
My hope for those people who don’t have Dystonia is this: please teach everyone you know about this very real neurological movement disorder that negatively impacts so many people’s lives, dispelling the myth that it’s “all in our heads”.
Finally, for those of us who have Dystonia, we need to fight the establishment. We need to push back when we are labeled wrongly, and we need to be a part of figuring out the solution. It’s in our best interest to make sure everyone knows the facts about Dystonia, whether it be a doctor, a judge, our Congressional representatives, the Social Security Administration…Depending on how this affects you personally, we each have an obligation to dispel this damaging myth to everyone in our lives.