Should Your Response to Pain Be Considered “Abnormal”? Somatic symptom disorder and DSM-5
The new category of “somatic symptom disorder” created for DSM-5 evaluates the coping abilities of people with chronic symptoms. Critics see this as a giant step backwards for people with poorly understood pain conditions—many who have fought for years for legitimacy—by labeling their struggles as psychiatric disorder.
Nobody questions whether chronic pain would be challenging for even the most mentally-hardy individuals. The salient question, instead, is whether the new diagnosis offers benefits (such as better treatment or quicker or more appropriate referrals) that can outweigh its potential risks.
From “realness” to “normality”
DSM-5, which emerged from much deliberation, has moved away from the judgmental question of whether pain conditions are physiological or psychological in origin. Gone are the “somatoform syndromes” from DSM-IV, the diagnostic bible of the past twenty years:
The implicit logic with these "somatoform" diagnoses was that if a physical cause was not apparent, then clinicians would turn to “psychological” explanations. People with poorly understood pain conditions have been vulnerable. Many chronic pain patients have been mistakenly told, “It’s all in your head.” Proponents of DSM-5 champion “somatic symptom disorder” as a response to this problem.
Somatic symptom disorder is an equal opportunity diagnosis, applicable to symptoms from cancer or unknown etiology. It reduces the need to determine the extent to which symptoms are medical versus psychological in nature. It also recognizes that mind and body are inextricably linked and relevant to the experience of all physical symptoms. These rationale seem reasonable and in line with our current bio-psycho-social views of illness.
While DSM-5 has moved away from evaluating the “realness” of pain, it has moved, instead, to evaluating the “appropriateness” of people’s response to it. Somatic symptom disorder is used when symptoms are accompanied by “abnormal” thoughts, feelings, and behaviors. This diagnosis includes any physical symptom present for at least six months that is distressing, disruptive, and accompanied by at least one of the following:
Normal response to the abnormal?
This raises the questions: What is a “normal” reaction for people with chronic symptoms? How are they supposed to think, feel, or behave? And what do “disproportionate,” “high,” or “excessive” responses look like?
When someone experiences a temporary painful occurrence, such as an acute injury, it is considered normal to vocalize distress, seek medical assistance, and take a hiatus from typical activity (thus assuming the “patient role”) until the pain is addressed. However, when the pain continues for an extended period of time, this approach is likely to be considered maladaptive. People with neuropathy, fibromyalgia, and other chronic conditions face the daily challenge of engaging in life, despite pain that may be severe and persistent. Does “normal” mean “average”? If so, consider the stark statistic that half of those who have lived at least three years with the intense face pain of trigeminal neuralgia (dubbed “the suicide disease”) take their own life.
Yet the new diagnosis does not take symptom severity into account. When pain itself is severe and persistent should “persistent thoughts about the seriousness of symptoms” be considered abnormal? Nor does it consider the additional burden when symptoms persist beyond six months. In the earlier stages, people might be likely and even expected to “devote time and energy” to figure out and improve their experience. Our culture strongly encourages people to focus on symptom amelioration – consider the rampant advertisements for quick fixes and relief. Our culture also emphasizes the value of immediate gratification and happiness that is associated with modern technology. Given this intolerance to distress, one might even expect a category for “insufficient” attention to health, for the nonconformists who may accept symptoms rather than seek help for them
Plus, when symptoms continue for years, people face grief over significant, accumulated loss. When is grief considered to be normal or pathological? Interestingly, DSM-5 has included bereavement as a new depressive disorder—unlike in DSM-IV, gone is the grace period in which grief is expected, intended to shield mourners from being overdiagnosed with clinical depression.
Critics argue that DSM-5 has become so general in scope that few people would escape eligibility for a mental health diagnosis. This broader reach can be seen in the new diagnosis of “mild neurocognitive impairment” for normal age-related cognitive changes and “disruptive mood dysregulation disorder” for temper tantrums. This leaves somatic symptom disorder to describe everyone else in the ages in between.
In the case of somatic symptom disorder, I wonder if “normal” might actually be fairly advanced, for any of us. Effective adaptation to ongoing pain is a challenging individualized process. Until faced with severe pain, nobody really knows how they would respond. Acceptance of pain may be more likely for Buddhist masters than for the average American. Indeed, the teachings of Buddhists, like Pema Chodron, who treat pain as an entry for compassion, appeal to many who seek solace in the face of exquisite pain. Coping well with pain requires emotional strength as well as mental and behavioral flexibility. Might “normal” adaptation reflect an “advanced” or “enlightened” stance?
The role of diagnosis
The DSM is intended to create a unified system that renders categories of human experience understandable, researchable, and treatable. Even its most vociferous opponents support the goals of increasing accuracy to contribute to evidence-based treatment. The fight is over where to draw the lines between diagnoses, not with the enterprise itself. With this comes the idea of false precision—as if there is a “right” way to categorize observations and with this, the promise of better results. Yet all categorization system are based on human judgments, regardless how scientific. Who is to say, for example, where the color “red” becomes “orange”?
When classifying mental illness, the stakes are high. Ardent critics, including Allen Francis, MD, who spearheaded the DSM-IV, recommend ignoring DSM-5; and NIHM has withdrawn its support.
Scientific criteria classify eggplants as berries; yet most people continue to treat them as vegetables. However, the legitimate fear (and hope) with psychiatric diagnosis is that DSM categories will reflect and guide our perceptions. History has shown the fallout from snafus, such as DSM-III’s pathologization of homosexuality.
However the diagnosis wars play out, the machinery is in place to implement the new edition of DSM into widespread practice. Workshops are ready to get practitioners up to speed on this long-awaited edition and insurance companies will incorporate the changes. What does this mean in practice?
Consequences of diagnosis
While any of us could decide to ignore the classification (and treat eggplants as vegetables); the DSM does not exist within a vacuum. Our medical-industrial complex is deeply invested in diagnosis and corresponding codes. And it’s double edged: Insurance companies require diagnostic codes, and sometimes fairly specific ones, to cover services, and at times even dictate treatment options per diagnosis. Yet these same companies also discriminate on the basis of diagnoses, rejecting or raising premiums for individuals with pre-existing conditions. Gone are the days described by my father, a retired psychiatrist, who could get away with writing “emotional problem” in patient charts to avoid assigning a stigmatizing diagnosis. Clients today also worry that their diagnoses will be shared as a matter of course in large healthcare systems, making all their doctors privy to information about their trauma history or other information they consider confidential. Even if stigma associated with mental healthcare is decreasing, individuals are legitimately concerned that psychiatric diagnoses will reduce their credibility when seeking medical care.
Critics of “somatic symptom disorder” also fear that physicians will become less interested in relieving the suffering of patients considered to have “abnormal” responses. But even doctors who use due diligence in their practice, and diagnose distress as they see it, would contribute to a significant increase in mental health diagnoses, if they heed the criteria of this disorder.
Drug companies, eager to expand their markets, also look for opportunities to offer treatments for new diagnoses. This includes rebranding existing medications for the treatment of another disorder, which results in sizable revenue despite the availability of generic equivalents.
Diagnoses also affect identity. In my recent foray into Facebook, I was struck by how many individuals form identities and communities around diagnoses. Yet within the great diversity of Facebook identities, somatoform disorders are absent – there’s not even one support group for hypochondriasis. It will be interesting to see the degree to which the new “somatic symptom disorder” is embraced or ignored.
The bottom line
The intention of somatic symptom disorder is to provide a way to identify people struggling to adjust to chronic conditions. But when pain itself interferes with life quality, do people benefit from having a mental health diagnosis? What is actually required for people to receive appropriate treatment?
Part of this depends on whether they have insurance coverage. Those who can pay out of pocket and bypass the double-edged insurance requirement for diagnosis may be able to avoid labeling – and are vulnerable only to the judgment of their medical providers. This new classification provides greater reason to talk with your providers about diagnosis. This is especially salient for doctor’s visits in which mental health diagnoses are not required for treatment. It is possible that doctors may see themselves as more precise if they consider this diagnosis. If your doctor views your response as beyond what is “expected,” use this to open the discussion about your experience and needs.
For those in or seeking psychotherapy, talk with your therapist. Somatic symptom disorder may be taking the place of “adjustment disorder,” which in DSM-IV was the “do no harm,” weigh-station diagnosis, that could allow for a certain period treatment without something more definitive. Engage with your therapist about the most effective diagnosis that minimizes stigma, while providing sufficient traction to satisfy insurance companies should more therapy be indicated.
It will be interesting to see whether we will see a paradigm shift in discourse about “realness” of physical pain to how well people are coping with it.
If expanding the population that receives mental health diagnoses reduces stigma and levels the playing field, this would be progress. But not if these diagnoses are grounds for discrimination by doctors or insurance companies.
© 2013 Deborah Barrett www.paintracking.com
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