When illness is real and when it's "contested"
Some years ago, a sinewy chap sought my help for an aggravating condition. This young man was convinced that microscopic bugs were crawling over and under his skin. You can imagine how horrible this creeping sensation would be and it had driven this guy to a frenzy of restlessness. His arms and legs were covered with excoriated sores and fingernail-induced streaks of scarlet. I inspected him from head to toe and couldn’t find evidence of insects or parasites. Then, as I silently puzzled the situation, he handed me a smudged envelope and asked me to carefully look inside. I removed a half dozen pieces of scotch tape, each holding a spattering of blackish specks. These specks, he declared, were the bugs that were tormenting him. I was doubtful, but nonetheless took a close look under a microscope. And while I didn't see signs of movement or anatomic structure, I wasn’t sure what the specks were or where they’d come from. After several minutes of debate, during which my patient wanted answers and I challenged his theory but failed to offer an alternative explanation, I noticed something. His fingernails were crusty. Along the nail bed and under the nail tips I noticed a blackish substance that looked like..."Are you a painter?" I asked him. Well, indeed he was, and it seemed clear to me that he was mistaking paint chips for parasites. But, he remained dubious. I thought he probably had a psychiatric condition called "delusional parasitosis;" he was certain that he had a treatable infestation.
Years later, I wonder whether this patient and I were meeting at the intersection of a contested illness known (to some) as Morgellons syndrome. You may have heard of Morgellons before; it received some media attention around the time that the Centers for Disease Control and Prevention (CDC) announced they were partnering with Kaiser Permanente to study the syndrome. But more on that later. First, what exactly is a “contested illness”?
To define “contested illness,” let’s start with the concept of “medicalization” – the process by which aspects of the human situation are described and treated as medical conditions or illnesses. For example, bad breath is diagnosed as “halitosis”, and excessive sweating transforms into “hyperhidrosis.” Writes Dr. H. Gilbert Welch in an LA Times editorial: “Everyday experiences get turned into diseases, the definitions of what (and who) is normal get narrowed…we doctors feel increasingly compelled to look hard for things to be wrong in those who feel well.” Lately, the medicalization of society has been driven forward by several dynamics. These include the insatiable market and marketing of personal health and beauty products, and the Internet-enabled organizing capability of condition-specific support groups. When advocacy groups (arguing that they are suffering from a treatable medical condition) collide with skeptics within conventional medical institutions, the result is a “contested illness” such as Morgellons.
Nearly ten years ago, biologist Mary Leitao’s s two-year-old son developed a strange skin condition. He scratched at himself incessantly, creating sores that, upon close inspection, contained bundles of multi-colored fibers. The physicians Leitao consulted were either baffled or skeptical. Frustrated, Leitao set out to educate herself and, in the process, discovered that her son’s symptoms had been described before, as far back as the 1500s. In fact, she found a name for the problem in Thomas Browne's A Letter to a Friend (1690). The letter described a "distemper of children... called the Morgellons, wherein they critically break out with harsh hairs on their backs." Determined to help her son and others like him, Leitao created the Morgellons Research Foundation and its website to disseminate information about the condition. She was surprised when thousands of strangers with similar symptoms contacted her. Pretty soon, Mary Leitao’s frustration had transformed into an advocacy movement. But, experts in dermatology and psychiatry were not convinced – the overwhelming opinion from the medical community was that Morgellons was a variant of delusional parasitosis – a well-described psychiatric condition. According to dermatologist Norman Levine (quoted by Brian Fair in his recent article in Sociology of Health & Illness), “[Morgellons] is not a mysterious disease…If you polled 10,000 dermatologists, everyone would agree [that Morgellons is Delusional Parasitosis].”
As Morgellons became more contested, the CDC, at the behest of some members of Congress, got involved. The CDC chose a middle ground in nomenclature – calling the condition “unexplained dermopathy,” and partnered with Kaiser Permanente to enroll and study patients suffering from “…symptoms including crawling, biting and stinging sensations; granules, threads or black speck-like materials on or beneath the skin; and/or skin lesions…”
And so here we are, several years later, waiting for the results and a peer-reviewed publication. The CDC website states that data collection for the study (which included skin samples from affected patients) is complete and under review by an expert panel. A press officer at the CDC confirmed this status (an inquiry to the Morgellons Research Foundation was not answered).
Whatever the CDC reports, in my opinion the Morgellons story illuminates two distinct points. First, patients’ symptoms should always be taken seriously and symptomatic treatment offered if available. In the case of Morgellons-type symptoms, this means a thorough exam to look for an explanation and (at a minimum) recommendations to alleviate symptoms (such as hydrocolloid dressings, low-dose steroid creams and anti-itching medications). Second, the medicalization of the human condition contributes to the development of contested illnesses and this is not healthy. Is Morgellons the medicalization of a psychiatric condition or is it an unexplained illness? We don’t know. But while it is clear that those with an “unexplained dermopathy” do not feel well, it is also very unclear whether modern medicine is capable of a definitive solution to their problem.
Whatever the answer to the mystery of Morgellons, the dynamics that have made it a contested illness are not going away. I have a feeling that those dynamics will be bugging us for some time.
**Dr. Ballard is not a part of the Kaiser Permanente team involved with Morgellons research.