My name is Richard Lawhern. I advocate for nearly 5,000 chronic pain patients as a volunteer moderator and content writer at “Living With TN“, a social networking website. We support people with Trigeminal Neuralgia – the worst pain known to medical practice.
In this note, I offer a message to the American Psychiatric Association (APA) on behalf of millions of patients with chronic pain and rare medical disorders. The APA is bringing real harm to millions of people. In May of last year they published the 5th edition of a book which defines much of the practice of psychiatry and psychology. Despite APA disclaimers, the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is a de facto standard for mental health practice and teaching, used around the world by medical doctors, psychiatrists and researchers. DSM categories are the basis for a lot of mental health treatment and insurance reimbursement.
During 14 years of its development, the DSM-5 has become controversial among medical patients and with many psychiatric and medical professionals. As critics have pointed out, much of the DSM is unscientific in origin and unreliable as a guide to psychiatric interventions. Data to show validity are missing for over half of the defined DSM categories. Many are difficult to distinguish from one another – even for psychiatrists. In many other categories, effective therapies are largely missing.
At least two disorders newly defined in the DSM-5 may inappropriately label millions of people with a psychiatric disorder. These are the so-called “Conversion Disorder” (Functional Neurological Symptom Disorder) and “Somatic Symptom Disorder” (SSD). The unproven assumption underlying both is that emotional distress can be “converted” into physical pain, seizure-like incidents or other symptoms not explained by physical disorders known to medical doctors.
With SSD, you can be labeled with a mental problem simply because you have deep distress about your health that a doctor judges to be “excessive” or the doctor thinks your life has become dominated by your illness and symptoms. The same label may be applied to you if a doctor considers you as “over-involved” in the symptoms of a child for whom you are a care-giver. Cases have already occurred in which children have been removed from the custody of parents deemed to have facilitated their “illness behaviors”.
While psychosomatic disorders appear in previous editions of the DSM, the new SSD is particularly problematic. The scope of the disorder and diagnostic criteria are greatly broadened from the DSM-IV. SSD may now be applied to patients with either diagnosed or undiagnosed problems. Only one criteria of several need to be applied as a basis for the diagnosis.
There is reason to believe that SSD may be widely assigned to patients in the early stages of relatively complex medical problems such as Lupus, Lyme Disease, cancer, diabetes, cardiac problems, Chronic Fatigue Syndrome, Irritable Bowel Syndrome or fibromyalgia. Many fibromyalgia and CFS patients already report being told that their medical problems are primarily emotional rather than medical in origin.
Patients have deep concern that once placed in their records, psychosomatic labels will deny them further medical assessment and effective care. The dangers of assigning a psychosomatic diagnosis are shown in a March 2013 article by Alice Philipson in the Telegraph of London. The title is: Professor Dies of Lung Cancer After Doctors Dismiss Illness as ‘Purely Psychological.’ If the DSM-5 SSD category is widely used in its present form, this patient fatality could be joined by many more. Rare disorders and chronic pain patients are already frequently dismissed or marginalized as “head cases.” DSM-5 will only make this problem worse.
Thus this message to the APA:
‘you’re talking to your peers when you should be listening to your patients. Pending the outright withdrawal of the DSM-5 as a failed effort, it is time to start over, employing evidence based medicine instead of ivory tower surmise. Next time, include patients and non-psychiatrists among the voting members of your task force and throw out any category that isn’t strongly supported by consistently reliable medical evidence’.
The alternative may be to see your profession discredited for its willful ignorance of simple common sense and its arrogant rejection of the patient as the most reliable reporter of their own health issues.