UPDATE 01/19/2013: On January 16-17, Dr. Allen Frances communicated directly with IBS Impact to report that the DSM-5 work group has rejected the advocacy efforts spearheaded by Suzy Chapman and him to tighten the criteria for Somatic Symptom Disorder to reduce the chances of mislabeling those with medical illnesses. Dr. Frances has a new post on the Psychology Today website with details:
Other updated commentary on this issue can be found on Suzy Chapman’s Dx Revision Watch website and in the article by author and blogger on chronic illness, Toni Bernhard, JD, who also writes for Psychology Today, “Your Physical Illness May Now Be Labeled a Mental Disorder”
Not all mental health professionals use the DSM criteria. Some report using the diagnosis codes in the International Classification of Diseases and Related Health Problems (ICD, currently ICD-9 CM in the United States), which covers all medical or psychological or behavioral diagnoses. It is reported by the American Psychological Association Practice Central site, that as of October 1, 2014, the Health Insurance Portability and Accountability Act (HIPAA) will mandate that all providers use ICD-10 CM for insurance billing and related purposes. Some professionals have expressed the hope that this requirement will blunt the impact of the DSM-5 changes in the U.S., but this remains to be seen. The IBS Impact administrators, as well as several members and followers, continue to be concerned about this situation and will report on any new developments or advocacy opportunities if they arise.
Recently in the IBS and chronic illness community, several professionals and self-advocates have begun expressing concern about proposed changes in the Diagnostic and Statistical Manual for Mental Disorders, commonly known as the DSM. This is a lengthy reference book published by the American Psychiatric Association as a guide for mental health professionals in diagnosing their clients or patients according to standard criteria. The DSM is revised periodically and the 5th edition is expected to be released in 2013. While there are many controversial proposed changes, one that has received relatively little attention in the mainstream media is particularly alarming in its potential implications for people with chronic illnesses, especially ones that are still scientifically poorly understood, like irritable bowel syndrome or commonly overlapping conditions like fibromyalgia, chronic fatigue syndrome and interstitial cystitis among others.
According to Suzy Chapman, a health advocate in the United Kingdom in her article, “Somatic Symptom Disorder Could Capture Millions More Under Mental Health Diagnosis,” it is proposed that four separate and stricter diagnostic categories currently in the DSM-4 be revised to a single umbrella diagnosis in the DSM-5 to be named “Somatic Symptom Disorder.” As paraphrased in “Mislabeling Medical Illness as Mental Disorder” by Allen Frances, MD in the U.S. magazine Psychology Today, Chapman writes in part:
“A person will meet the criteria for SSD by reporting just one bodily symptom that is distressing and/or disruptive to daily life and having just one of the following three reactions to it that persist for at least six months: 1) ‘disproportionate’ thoughts about the seriousness of their symptom(s); or 2) a high level of anxiety about their health; or, 3) devoting excessive time and energy to symptoms or health concerns.”
As noted by both Chapman and Dr. Frances, as well as Tiffany Taft, PsyD of Northwestern University and Oak Park Behavioral Medicine, whose psychotherapy practice specializes in IBS, inflammatory bowel disease and other chronic medical conditions, these criteria are extremely broad, very subjective according to the personal definitions and potential biases of an individual mental health professional, and could potentially be interpreted to encompass almost anyone with a disruptive chronic illness, even a relatively well-defined one such as cancer, diabetes, rheumatoid arthritis or life-threatening food allergy, at a given point in time. In many situations, the person may be expressing typical and understandable stress or grief related to chronic pain or other ongoing symptoms or risks. In her own blog post on this subject, “Moving In the Wrong Direction,” Dr. Taft also raises concern that normal emotional reactions of a parent or caregiver of a child with a chronic illness may be pathologized as well.
Specific to IBS and commonly overlapping or other complex functional syndromes, Dr. Frances quotes Chapman:
“The Work Group is not proposing to classify Chronic Fatigue Syndrome, Irritable Bowel Syndrome, and Fibromyalgia within the DSM-5 ‘Somatic Symptom Disorders’ section, but these patients and others with conditions like chronic Lyme disease, interstitial cystitis, Gulf War illness and chemical injury will now become particularly vulnerable to misdiagnosis with a DSM-5 mental health disorder. In the field trials, more than one in four of the irritable bowel and chronic widespread pain patients who comprised the ‘functional somatic’ study group were coded for ‘Somatic Symptom Disorder.”
Dr Frances, who is listed in his article as the chair of the task force for the DSM-4, former chair of the Department of Psychiatry and current Professor Emeritus at Duke University School of Medicine, agrees that this new proposed diagnosis of Somatic Symptom Disorder may encourage a premature rush to label a person’s medical condition as “all in the head.”
This disconcerting possibility is not unfounded. Historically, because IBS shows no overt biological markers that can be discerned by existing tests available to clinicians outside of highly specialized functional gastrointestinal research labs, it was long believed that there was nothing physically wrong with people with IBS. Ongoing research worldwide over the past 20-30 years has increasingly disproved that assertion, but widespread stereotypes and misconceptions remain. Many people who have had IBS for some time can anecdotally recall at least one relative, acquaintance or health care professional who told them that IBS was “all in the head” or similar dismissive comments, and even many people with IBS themselves continue to believe that IBS is “caused” by emotional stress rather than, more accurately, potentially worsened by stress depending on the situation and the individual. As IBS Impact wrote on this blog on October 9, 2011, a study conducted by UCLA in 2010 showed that compared to an international group of functional GI disorder experts, considerably more gastroenterologists, primary care physicians and nurse practitioners in local communities still support the outdated notion that IBS is a diagnosis to be given only when all other possible disorders are ruled out. In addition, Dr. Taft’s research interests focus on stigma in gastrointestinal disorders. She and her colleagues at Northwestern, in cooperation with Olafur Palsson, PsyD at the University of North Carolina Center for Functional GI and Motility Disorders, have found that study participants with IBS or inflammatory bowel disease both perceive stigma, but those with IBS perceive more. Dr. Taft’s blog post linked here includes links to the abstracts of her team’s published results for both groups.
It is hoped that there will be further revisions to this portion of the DSM-5 before the final version is released, but at this time, there is no clear information as to if this is planned. Regardless of the outcome, this situation underscores once again why it is important for those of us with chronic, poorly understood conditions like IBS, our loved ones, and the professionals who support us to make conscious efforts to begin or continue public awareness and advocacy about the realities of life with IBS , even if it requires stepping out of our initial comfort zones. If we do not speak out against this slippery slope, we risk even further invisibility and stigmatization in the future.