What does calling something a disorder do? the case of Chronic Fatigue Syndrome.
By Dena T. Smith
This week’s Science Times reported that Chronic Fatigue Syndrome, (which causes the symptoms one might imagine, given the name of the condition) a set of symptoms with unidentified etiology, has been linked to a virus. This possible cause may potentially shed some light on the mysterious derivations of the syndrome, which many sufferers would like to see conceptualized as an illness or disease. While the story of Chronic Fatigue Syndrome is a fascinating and sometimes disturbing one, for sociologists, is is important to step back and take note of these moments in which new illnesses make their way into our medical vocabulary. These instances shed light not only on the process by which things become medicalized, but also on the consequences of medicalizing conditions for those who suffer their effects, often for long periods of time – and it is often only after the medical word claims a condition as a legitimate “disease” that suffers finally feel as though they are being taken seriously.
In order to be considered a legitimate illness, something must be a medical condition or disorder – a disease. This alone should make us pause and ask ourselves “why?” Given that the symptoms have not changed and people are not suddenly suffering more intensely or in greater quantities, the only reason people who have Chronic Fatigue can breathe a sigh of relief this week is because the medical community may, for the first time, begin to take their symptoms seriously, rather than brushing them off as psychologically-driven or worse, hypochondriacal. In other words, people with symptoms of chronic fatigue, have, for years, been told their symptoms are the result of depression or more general neurosis, but they have rarely been taken seriously, as people with a genuine medical condition usually are. This is not unlike the history of many conditions once regarded as “lesser-than-diseases.” Fibromyalgia, for instance, is a perfect example – it is a disease that can be quite debilitating, often causing severe physical pain. For years, people (mostly women) who reported the type of pain associated with this condition were thought to be experiencing their symptoms as the result of psychological problems. These individuals were seen as sort of modern-day hysterical women, depicted in much the same way as Freud described. Drugs such as benzodiazepines, prescribed for anxiety, were dolled out by the bottle to sufferers of Fibromyalgia symptoms, much to no avail – except to create many benzodiazepine addicts. To make quite a long story short, it ultimately became clear that this was, in fact, an illness and it was only at this point that doctors, sufferers, their families and onlookers at large, began to take the condition seriously. We really need to stop and ask ourselves why we must always wait for a disease label to take a set of symptoms seriously.
However, there is a dark side of medicalization as well. Labeling something a disorder changes the way we see the person afflicted with the symptoms; it pushes us to blame biology rather than psychology or an individual’s character or life choices for the cause of their illness. But this can also have its own set of consequences (see my previous post on obesity) ranging from the removal of personal responsibility for any condition to the increasingly common assumption that all conditions are rooted in biology – and perhaps nothing else. When illnesses become over-medicalized, we tend to ignore any of the non-biological roots of suffering (see my previous post on the implication of genes in depression). The problem of medicalization extends beyond the fact that any condition that does not get a medical label (such as Chronic Fatigue Syndrome) is not considered a real disorder. A major problem on the other end of the spectrum is when conditions are medicalized when there is not yet enough evidence to show that it is a medical entity. Either end of this problematic spectrum has serious consequences for people with the symptoms of whatever condition is in question. What this points us to, ultimately is that we ought to pause and question how we assign legitimacy to symptoms of any condition, disorder, disease or unnamed entity. Naming, labeling, and generally carving out a descriptive category for something is part of what makes us able to understand the world, but perhaps our need to know that something has been deemed a viable disease by the scientific and, more specifically, the medical community causes us additional suffering. Certainly, this calls for more sociological attention to be paid to the process of diagnosis and how some things become diseases, while others remain conditions or unnamed symptom clusters.
It seems to me that there is something here about conceptualizations of knowledge, too. When a patient presents symptoms that are familiar to a physician–associated with a disease vector–then the physician has a scripted response. When a patient presents with conditions outside the physician’s knowledge, to avoid that admission the physician can simply challenge the patient’s legitimacy. This is such an important issue, as health outcomes are riding on the success of patient-physician relationships.
Keri