- People with Long COVID experience stigma and dismissal from healthcare providers.
- Medical education potentiates stigma and mistreatment of individuals whose illness is not easily objectively identified.
- Trying to treat Long COVID with psychotherapy alone is like trying to meditate away diabetes without insulin.
When working with Long COVID patients, I regularly hear things like “My doctor thought I was crazy” or “My doctor doesn’t believe me,” or “Everyone thinks this is all in my head.” Why do doctors convey, either explicitly or implicitly, a belief that a patient’s psychological condition is solely responsible for their physical symptoms?
I recently came across a practice study question for medical boards that started with a prompt that looked something like this:
“A 29 year old nurse with a history of anxiety comes in to the emergency room with severe abdominal pain. She had been to the emergency room four times over the past three weeks with no abnormal results on laboratory studies or imaging. She is extremely distraught by the pain and angry with the medical team for not taking her seriously.”
The intention of the question was to guide learners to a diagnosis in the DSM-V, the diagnostic manual for psychiatric disorders. Somatic symptom disorder is defined there as: “one or more somatic symptoms that are distressing or result in significant disruption of daily life,” where somatic refers to physical symptoms. Additionally, these must be “excessive thoughts, feelings, or behaviors related to the symptoms…[with] disproportionate and persistent thoughts about the seriousness of the symptoms AND/OR persistently high level of anxiety about health or the symptoms AND/OR excessive time and energy devoted to these symptoms or health concerns.”
Somatic symptom disorder, as well as conversion disorder, are psychiatric issues that cause a great deal of morbidity. However, the way they have been historically taught in medical education potentiates stigma, leaves little room for diagnostic ambiguity, and can result in misdiagnosis and poor care. Further, the subjective nature of the designations “excessive,” “disproportionate,” and “excessive” leave room for tremendous variability depending on a provider’s understanding of what type of reaction a disease should produce. For example, one who is uneducated about the vast array of potential Long COVID symptoms may view almost any increased concern about one’s own health following Covid-19 as “excessive” or “disproportionate.”
It was Sigmund Freud and Joseph Breuer who first posed the notion that thoughts and feelings that are incompatible with someone’s psychological state could be pushed down into the unconscious, instead coming out in the form of physical symptoms, thereby acutely minimizing anxiety. This remains a majorly held belief in much of medicine, though emerging developments in neuroscience show that in many cases, processes are neither solely psychological nor biological, but rather both. Many still think in dichotomous way: A disease is either psychological or biological in origin and cannot be caused by both. In fact, this is sometimes true; for example, our current understanding of diabetes is that it is a disorder of insulin production or response to insulin, rather than, say, a psychological intolerance of glucose. However, things get a bit more complicated when you consider that meditation may aid in lowering blood sugar.
The question then becomes one of relative weights. If both psychology and biology are important factors, which one deserves more attention? It depends on the circumstances and depends on the disease. Trying to treat Long COVID with psychotherapy alone is like trying to meditate away diabetes without insulin. It will only take you so far.
Why patients get slapped with the psychosomatic label
Doctors are trained to develop “illness scripts," or mentally held amalgams of the characteristics of diseases. Unassuming medical students quickly develop an illness script for somatic symptom and related disorders in which the prototypical patient is a young woman, no doubt a remnant of female hysteria. In this script, the workup is often normal (DSM-IV emphasized that there be no medical explanation for the symptom, while this designation was eliminated in DSM-V). Medical training teaches doctors to be quick on their feet, and recognize and treat illness by established methods; it leaves little room for creativity. This is exemplified by standardized exams, flowcharts, and protocols. In fact, medicine may attract individuals who are highly logical, detail-oriented, organized, and efficient, as these qualities lend themselves to the way that modern medicine is practiced. Unfortunately, this may result in physicians missing the forest for the trees.
As a result, patients who present with symptoms that cannot be explained by laboratory findings, particularly younger women, are already likely to raise suspicion for somatic symptom disorder or a psychogenic basis for their symptoms. Anxiety is often, unfortunately, a culprit. Its presence raises alarm bells within a physician for a “pure” psychiatric disease, fitting nicely into the preexisting illness script for somatic symptom disorder, and patients are then given a referral for a mental health professional. Indeed, some have directly called for medically unexplained symptoms to be considered “red flag symptoms of depression and anxiety.” Instead, anxiety should be considered more broadly, as, for example, it may be the first sign of a neurological process such as Alzheimer’s disease.
Patients with Long COVID have encountered stigma and dismissal first-hand, often from providers who are themselves overworked, undervalued, bitter, and frustrated. A patient who does not easily fit into an illness script that has known medical treatments may erroneously fall under one of many diagnoses of exclusion — diagnoses that cannot be proven objectively. What can ensue is a continuous wheel of questioning one’s own reality, made worse by the fact that a psychogenic cause cannot be disproved unless a non-psychogenic cause is found.
Some doctors, seemingly well-intentioned, assure patients that “your symptoms are very real.” This can further potentiate self-doubt by continuing to operate within this dichotomous world in which some symptoms are “fake” and some are “real.” As one patient put it, “I never even considered that this might be something in my head until a doctor assured me that my symptoms were 100% real.” What might come across as a seemingly supportive statement sowed the seeds of doubt, a doubt that was exacerbated with each negative test result.
In the meantime, developments in understanding Long COVID are occurring at a rapid pace and providers are often unaware of them.
Thus, a broken system promotes a rudimentary picture of psychogenic disease, with illness scripts based on oversimplified understanding, and applies them in circumstances that are fast-paced and siloed. It does not reward creativity or “out of the box” thinking, and encourages providers to stay in their lane by referring out conditions that do not fall under their purview. Until medicine takes a closer look at itself, stigma and alienation of patients will persist.
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