Up to now, a diagnosis of chronic fatigue syndrome rested mostly on the patient’s subjective narrative of their symptoms. For a long time, it was pretty standard in the medical community to repudiate and dismiss chronic fatigue syndrome. The brief from Stanford Medicine notes that “it’s not uncommon for CFS patients to face several mischaracterizations of their condition, or even suspicions of hypochondria, before receiving a diagnosis of CFS.” Earlier this year, a team of medical researchers in the U.K. published a comprehensive study that concluded that many general practitioners remain reluctant to diagnose patients with CFS because they are either ignorant of or skeptical about the existence of the condition. In many ways, the hallmark of the CFS experience is less the intense symptoms and more the deep skepticism sufferers encounter from their family and from doctors.
The intimate relation between diagnosis and social legitimacy is well-documented. Medical sociologist Kristin Barker suggests that we should think about illnesses on a “continuum of verifiability”: a spectrum that contains conditions that are clearly identifiable (through plain sight or through biotechnological tools) on one end, and more contested conditions whose verification relies on descriptive and subjective evidence on the other. The further your condition is toward the subjective end of that spectrum, the more likely your condition’s legitimacy will be challenged.
And people believing that you actually have a condition is no small thing. In many ways, being denied social recognition of suffering can be as deleterious to well-being as the symptoms themselves. Sociologists have identified all sorts of benefits that people with conveniently diagnosable illnesses are more likely to enjoy relative to those with more contested conditions. They include interpersonal sympathy, charitable acts from one’s community, insurance-related assistance, and even attention from the pharmaceutical industry—which is always on the lookout for new conditions whose treatment can be monetized. Less diagnosable conditions, on the other hand, make one more likely to be labeled as lazy or crazy. In other words, conditions that defy diagnosis constitute a double affliction: physical and social.
CFS is one of a bunch of prominent “medically unexplained” illnesses, including fibromyalgia and multiple chemical sensitivity, that afflict many people but that lack full-on social acknowledgement. Anthropologist Joseph Dumit calls them “illnesses you have to fight to get.” In the absence of objective physical indicators, these illnesses require dramatic and persistent social efforts on the part of patients to install their condition in our cultural consciousness. This is a difficult task because when conditions lack codified medical and social recognition, it’s harder for patients to find people who share their symptoms, exchange knowledge, and raise awareness.
The new Stanford discovery provides some verifiable evidence that CFS sufferers can begin to start cashing in on for increased social legitimacy. So while this research gets medicine no closer to relieving sufferers’ physical symptoms, it takes a step toward alleviating the social maladies of people with CFS.