The following is a patient response to the ICD-10-CM:

November 15, 2013

I wish to comment on the proposed SSD diagnosis in the ICD-10-CM

I have Functional Neurological Disorder, or FND, (formerly called Conversion Disorder, or CD) and Psychogenic Non-Epileptic Seizures, or PNES. For 18 years I followed every recommendation made by a doctor, all to no avail. Because no definitive test for FND and PNES exists, and the symptoms are intermittent, it’s only natural that doctors would question whether I’m faking it. Doctors asked me this question, both directly to my face and indirectly through written questionnaires. While the question can seem insulting, I understand the need to ask it. So I answer it, directly and without qualifiers: My answer is no, I’m not faking it.

I hear and acknowledge doctors who suggest that my mind may be playing tricks on me; perhaps my mind just goes “click,” sometimes, and stops working properly. Perhaps the ordinary stress and strain of my life caused a mental injury. Perhaps my brain was somehow prone to such injury. I’m not foolish enough to deny this possibility. I know that while I have only one lifetime of experience and only one mind with which to explore, doctors have the privilege of exploring many minds and bodies.

It’s necessary for us to grant doctors this privilege if we are to find a treatment that works. I get concerned, however, when doctors prescribe treatments that fit a disease model manufactured at a medical convention, but are not shown to be effective in actual practice. (Goldstein et al 2010) That’s not good medicine.

Because I answered the doctors’ questions with complete candor, I feel justified turning the question around and ask doctors questions of my own: Are you faking it? Are you deflecting the subject away from your own inability to offer a better explanation? Are you feigning confidence where confidence is not warranted? Are you offering treatments in the absence of knowledge of the real cause of FND?

By all accounts, SSD is not a well-defined illness, and I could half-sarcastically argue that is a good thing because it speaks the truth about my illness as I experience it. Maybe it’s appropriate and useful to have an admittedly poorly understood diagnosis available in the ICD-10-CM book of codes. Such a diagnosis would make it more difficult for neurologists to so easily disengage from a case, as they did with me, and might spark more collaboration between psychiatry and neurology, as Kranick, Gorrindo, and Hallett proposed in 2011.

However, my fear is that a future “working group” will convene and attempt to better define SSD using half-guesses and assumptions. This will result in another pretentious diagnosis code, like Conversion Disorder, resulting in more psychiatrists engaging in wild goose chases looking for fictional psychological stressors, and deterring other mind/body specialists, including neurologists, from engaging in the study of what by all accounts is a perplexing problem.

So it is with sorrow that I must object to the creation of the SSD diagnosis. Let us not promote this work of fiction. Let us also not waste any more time pointing the finger of blame on the patient, and instead let’s work together to find better treatments for this illness. Let’s stop pretending we know things we don’t and instead, look for a solution that works.

I’m not faking this illness. My question to doctors is, are you?

Sincerely,

Mark Thompson

References:

Goldstein, L. H., Chalder, T., Chigwedere, C., Khondoker, M. R., Moriarty, J., Toone, B. K., & Mellers, J. D. (2010). Cognitive-behavioral therapy for psychogenic nonepileptic seizures: A pilot RCT. Neurology, 74, 1986-1994.

Sarah M. Kranick, MD, Tristan Gorrindo, M.D., and Mark Hallett, MD  Psychogenic Movement Disorders and Motor Conversion: A roadmap for collaboration between Neurology and Psychiatry, Psychosomatics. 2011 Mar-Apr; 52(2):109-116