By Laurie Edwards
As a young woman, I was told more than once that my severe respiratory symptoms were perhaps “psychosomatic,” caused by stress or anxiety. Being sick enough to be in the intensive care unit was challenging enough; having my credibility called into question while I was struggling simply to breathe made the situation that much harder.
When biopsies confirmed that I had a rare genetic lung disease called primary ciliary dyskinesia, I had “proof” that my physical problems were just that—physical.
Unfortunately, not every condition lends itself to biopsies and concrete diagnostic tests, and that ambiguity leaves a hazardous gap that could soon be widened by a new psychiatric diagnosis.
Next month, the American Psychiatric Association will release the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5. Critics have found plenty to complain about in this new edition of what’s considered the mental health diagnostic bible, including its redefinition of depression, but one of the most contentious changes is the inclusion of Somatic Symptom Disorder (SSD).
In short, the SSD diagnosis makes it much easier to diagnose physical symptoms as mental illness, and diminishes patients’ ability to report normal emotional responses to the upheaval that physical illness can cause.
To get a sense of why Somatic Symptom Disorder is a flawed diagnosis, consider this: Patients meet its criteria if they have at least one symptom disruptive to daily life for at least six months and at least one of the following:
• Disproportionate thoughts about the severity of their symptoms
• Heightened anxiety over their symptoms
• Spending too much time and energy on their health concerns
Does this sound like mental illness? Perhaps, depending on who is doing the listening and categorizing. But it also sounds a lot like the trajectory of many chronic illnesses, and that’s the problem.
No group has more to lose with the introduction of Somatic Symptom Disorder than patients who live with chronic pain conditions, a disproportionate number of whom are women.
Women are three times more likely to manifest autoimmune disorders than men, for example; they’re four times more likely to be diagnosed with chronic fatigue syndrome and nine times more likely to be diagnosed with fibromyalgia.
Overall, some 50 million American women live with at least one neglected or poorly misunderstood pain condition like fibromyalgia, endometriosis, or interstitial cystitis.
Unfortunately, we are told our symptoms are all in our head all too often, too. Research shows that women are more likely than men to have their symptoms dismissed as emotional, psychogenic, and “not real.”
And even when our symptoms are acknowledged, women are less likely to receive aggressive treatment. This bias can lead to unnecessary delays in treatment, and coupled with inadequate physician training in pain and pain management, female patients are already in a precarious position.
Pain is subjective, and so is the interpretation of a patient’s pain. What one physician sees as mental illness, another could see as a reasonable response to a health issue that causes life stress.
In a revealing example, Science Daily reported last month that in a field study of the SSD diagnosis, it was applied to 15% of patients who had cancer or heart disease, and 26% of patients with irritable bowel syndrome or fibromyalgia. Further, some experts estimate that the definition is so broad that it could end up capturing 7% of all healthy people—some 14 million Americans.
Given the potential for misclassification, why the impetus to include Somatic Symptom Disorder in the DSM-5? According to Dr. Allen Frances, chair of the DSM-IV task force and professor emeritus at Duke University, who has widely criticized the SSD diagnosis, the APA “meant well in making this disastrous decision—believing it would help people access useful psychiatric services.” They didn’t calculate all the harms that could befall people who might be misclassified, including improper medical care, stigma over mental illness, or lost benefits as a result of the diagnosis.
Certainly, there are patients with mental illness who need psychiatric help, just as there are patients with mental health diagnoses like depression that can result in physical symptoms, and patients with chronic illnesses who experience mental health problems as a result of their physical conditions.
But for the millions of women living with pain conditions who still linger in the shadow of hysterical illness, the existence of SSD merely increases the chance they will be cast aside as histrionic and miss out on timely medical diagnoses and appropriate treatments.
So what can patients and physicians do? Dr. Frances hopes doctors will simply ignore Somatic Symptom Disorder. And patients? For a start, we can keep on doing what so many of us in the trenches already know is crucial: be informed consumers, advocate for ourselves, and find physicians willing to collaborate with us.
Laurie Edwards teaches writing at Northeastern University, and her next book, In the Kingdom of the Sick: A Social History of Chronic Illness in America, will be released April 9.