For the last six years, I have fought to legitimize an illness widely—and erroneously—believed to be “all in your head.”
I have myalgic encephalomyelitis, a debilitating multi-system disease that the Centers for Disease Control and Prevention conservatively estimates afflicts more than one million Americans. It is commonly known as chronic fatigue syndrome, a truly trivializing name that belittles what I and other sufferers live with. (Though it is preferable to the condescending term “yuppie flu.”) Doctors have told many people with the disease—including myself—that there is no treatment, and more often, that what we are experiencing is merely a manifestation of the mind.
The latter is the basis for psychosomatic theory, which is the idea that the mind can produce diseases. Diseases commonly thought to be psychosomatic—such as irritable bowel syndrome and Crohn’s disease—can pummel a healthy, thriving member of society without any indication of how. This theory became popular in the US in the early 20th century; Sigmund Freud is the most well-known name associated with it, who maintained that “hysteria” could cause any number of physical illnesses.
Similar theoretical concepts like somatoform disorder suggest that the body can only cope with a finite amount of mental factors before physical symptoms, like headaches, begin to show. But there is a substantial difference between an acute problem like a stress-related headache and claiming that a serious chronic illness is psychosomatic. With the exception of chronic migraines, a headache is generally considered to be an acute symptom, not a chronic illness.
The theory of psychosomatic illness is flawed. Many serious illnesses are initially tagged as psychosomatic because they are too complex for doctors to offer a singular explanation or because the patients have no physical symptoms. There may be a connection between the body and mind—the brain is, after all, an anatomical feature of the body—but this does not mean that physiological diseases can be manifested through mental factors. For example, a 2007 commentary published in the Journal of the American Medical Association concluded that while stress can be a factor in some diseases, “a causal relationship” could not be found.
Dr. Dale Peterson, former president of the Oklahoma Academy of Family Physicians, is even more adamant that physiological disease cannot be caused by mental factors. “Psychological and sociological dynamics may predispose an individual to illness or cause an illness to be much more severe, but other factors must be present to trigger the condition,” he says.
The idea that a disease can be generated from the mind not only lacks scientific evidence—it is belittling to those who suffer from physical illnesses. As Dr. Peterson explains, for someone in the medical field to say a physiological illness is psychosomatic is merely “a professional way of saying I don’t have a clue!”
I contracted myalgic encephalomyelitis after a bad case of mononucleosis in 2010 (an illness often jokingly referred to as the “kissing bug”). Within the first year, my condition had deteriorated to the point where I could no longer take care of myself; I had become bedridden, and eventually lost my ability to speak, eat, tolerate light, or lift my head off the pillow. Through a daily regimen of oral anti-viral medication and IV treatments, my health eventually started to improve. I can now speak polysyllabic words, chew soft food, and sit up in bed to see the sunlight streaming across my room.
But these improvements have had nothing to do with changes in my mental state; I did not will them to happen. Instead, my body was given the proper medicine to improve its physiological impairment.
Regardless, many doctors still disregard my ailments as some form of psychosomatic illness. But sometimes technology just isn’t advanced enough in order to reveal the true underlying physical symptoms behind a disease. For example, until the invention of the MRI in the 1970s, multiple sclerosis was believed to be a form of “hysterical paralysis.” Likewise, some forms of autism, particularly in children, were once thought by some psychologists to be due to a lack of maternal nurturing. Similarly, until inflammation could be measured, asthma was also commonly blamed on overbearing mothers. We all now know that these three diseases have true, physiological causes—not mental ones.
While these illnesses have largely overcome psychogenic theories, other physiological illnesses still face similar stigmas: Inflammatory conditions like Crohn’s disease, stomach ulcers, and irritable bowel syndrome (IBS) still carry psychosomatic overtones—usually stress-related—even though they have been proven to have physiological origins. Researchers at the University of Edinburgh, for instance, have compiled an overview of studies that link Crohn’s disease to factors such as genetics, immune function, and gut bacteria, not psychogenesis.
A lot of this misinformation has spread widely throughout popular culture despite being proven scientifically unsound. For example, a study published in 2011 in the Lancet, a prestigious UK medical journal, used psychosomatic theory to claim that cognitive behavioral therapy (CBT) substantially benefited people with myalgic encephalomyelitis. The study, known as the PACE trial, was eventually debunked and proved to be the product of bad science—but not before it had influenced public-health services to adopt treatment models, many of which actively harmed patients by prescribing exercise to severely ill patients based on psychogenic models.
There is hope, however. After all, multiple sclerosis and autism have managed to transcend the stigma of outmoded psychosomatic theory. But until the government and medical establishment realizes that psychosomatic theory has no place in modern medicine, diseases like mine will continue to be stigmatized, trivialized, and dismissed.