Opinion: New Diagnosis Risks 'It's All In Your Head' Response To Illness

Author Laurie Edwards (courtesy)

Author Laurie Edwards (courtesy)

By Laurie Edwards
Guest contributor

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.

The diagnosis ‘increases the chance they will be cast aside as histrionic’

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.

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  • E.J.

    This is deeply disturbing. I’m a female with serious health issues who has been treated dismissively by doctors for years. Years ago when I began having severe chronic pain and disturbing neurological symptoms, I was told by one neurologist that, because I was a professional artist, I was cursed with a propensity to have a “fantastical imagination” that would lead me to have a “fantastical interpretation” of my bodily sensations. The other doctors weren’t much more helpful. After several years of increasing pain and debility, lesions finally started appearing on brain MRIs. They still don’t know what it is, but at least I now have a chance at being taken seriously because there’s something that can be seen on a scan. Every person who has had a hard-to-diagnose chronic illness knows that when doctors come to the limits of their diagnostic abilities, they blame the patient. The availability of an official diagnosis like this is going to cause even more suffering and lead to even more delays in diagnosis and treatment for real physical illnesses that time-pressed and lazy doctors can’t be bothered with.

    • DW

      Saying that you might have fantastical interpretations of bodily sensations is not “blaming the patient.” Interpreting bodily sensations (whether “correctly” or not) is simply something the human brain does. Most doctors are not “lazy.” If they don’t find a medical cause for your symptoms, somatizing is one possible explanation, and a counselor might be able to help if that is the case.
      The mind/body distinction is not such a sharp one. It’s not an insult to you to suggest that therapy can help with symptoms that don’t have a medical diagnosis. Could the doctor be wrong, sure. But psychosomatic conditions are definitely a real thing.

  • Laura B

    This is really sad. What ever happened to common sense? Have they ever heard of Autoimmune diseases and pathogens that have yet to be identified?? Many of which are being discovered only recently? The real scientists are finding them at an astounding rate recently. So sad for sick undiagnosed people who will get thrown in the trash to suffer even more from this trashcan dx.

    The world was flat once and the sun revolved around it until someone dared to think outside the box and find the truth.

  • Laura B

    Obviously the people deciding this have never experienced a chronic, life altering, UN-DIAGNOSED physical illness. My theory is that the docs who make decisions like this get the best of care from within their own network from associates and consideration that their pain or symptoms are “real” since they themselves are docs. They wind up getting better care and a diagnosis because of the circles they’re in and the positions they hold. Lucky for them, but it leaves them clueless as to what regular people have to deal with.

    • DW

      Nice theory, but not true.

  • jolee6911

    The real trick to better care came from an insider who found out that the Doctors where cooking their charting. After years of your are depressed they cut out half of my digestive tract. When you join support groups you find out that coservative doctors are bullies.

  • MDDG

    I agree this is a nuanced situation that can be fraught, and I agree with the author that it would be frustrating for people with actual illnesses who are struggling to be diagnosed. However, let me offer another point of view. My dearest friend is the worst hypochondriac (SSD diagnosis probably) I have ever seen and she suffers tremendously. If she or anyone in her family (or pets) gets ill with anything, she fears the worst scenario and believes death is immanent. She cries, cannot sleep and works herself into a terrible state. I have known her for 30 years and she has cycled through this numerous times. When she is well, she is brilliant, funny and urbane, speaking multiple languages, well read, well traveled. But freckles become moles which become melanoma time and again, as one recurring example. She was finally diagnosed and prescribed something in the pharmacy class that also deals with obsessive thinking, and she is MUCH better. People used to become really annoyed with her and tell her to “act rationally,” so this diagnosis was a godsend for her.

    • bedhead

      Isn’t hypochondriasis already in the DSM? Couldn’t (shouldn’t) your friend receive treatment under that label? I think the problem with SSD is that it psychologizes people who are suffering normal reactive distress to serious illness, instead of people like your friend who have acute psychiatric disease.

      • DW

        What they did, in creating the somatic symptom disorder, was not create a new diagnosis but loosen the boundaries between several older categories (somatization disorder, hypochondriasis, conversion disorder, Munchausen, etc). So yes, hypochondriasis was there and it’s still there. It’s just not necessarily a separate category from, say, conversion disorder, factitious disorders etc.
        I understand why people fear that they could be labeled as having psychiatric problems when they have a medical condition that is difficult to diagnose. If referring for psychiatric consultation means that another medical disorder is overlooked, that’s bad. On the other hand, the new categorization breaks down some distinctions that were not really tenable, and makes it easier for people suffering from certain conditions to get help.
        It’s really not the crisis some people seem to think. They’re not going to diagnose you with “somatic symptom disorder” if they can find a physical cause for your symptoms, and if they can’t, what do you have to lose in talking to a psychiatrist?
        Perhaps some of this outrage comes from the outdated notion that a psychiatric diagnosis or psychiatric treatment is somehow shameful. It’s not.