The Empathy Exams

Jamison begins this essay introducing Paul, Lenny, Dawn, Kendra, and Patricia, who have been affected by Morgellons disease. She explains the symptoms, which are variable except for one: “strange fibers emerging from underneath the skin” (27). The disease originated with Mary Leitao, who diagnosed her son with Morgellons disease when doctors could not find any explanation for her toddler’s sores or sensation of crawling bugs beneath his skin. Jamison notes there is a disconnect between medical diagnosis and patient perception, highlighting the fact that doctors disbelieve this condition while patients are insistent on its validity. She even notes the Center for Disease Control conducted an analysis that provided no conclusive results as to whether Morgellons is real or the result of a delusion.

Jamison arrives in Austin to attend the yearly conference hosted by the Charles E. Holman foundation, a Morgellons advocacy group. She notes there are designated speakers, but some people get up and share experiences between speakers. She overhears snippets of conversation regarding the disease, attempts at treatment and cures, and people asking each other how they are feeling. Jamison meets Patricia, Shirley, and Dawn, adding details to their lives and how it has been affected by their condition in short snapshots. She lingers on Dawn, a nurse whose antibiotic-treated skin looks like that of an AIDS patient. Dawn also speaks on the fact that women are historically misdiagnosed, and she discusses her fears for the future because she no longer feels confident in her appearance. Jamison draws a connection between Morgellons disease and a discomfort in the body before talking about a woman named Rita, also a nurse who is now unemployed and divorced because of her condition.

Jamison draws parallels between the experiences of those with Morgellons and her own experience with a botfly larva in her ankle, which she acquired from a mosquito bite in Bolivia. She compares the disbelief of the medical professionals and how sharply that sense of abandonment was contrasted with the relief when a doctor confirmed there was a maggot beneath the skin of her ankle. The process of removal was simple, but following the procedure Jamison was filled with a paranoia that there was a second bug inside the wound. She watched and picked at the spot, but no second bug appeared, leading her to connect with those with Morgellons and the idea there was something inside of her she could not eradicate. Jamison then talks about Kendra, a young woman who wants to use the high-magnification microscope at the conference to confirm there is something beneath the skin of her face. Kendra believes her symptoms are getting worse but is still able to live a normal life. However, she is embarrassed by the scabs she has caused on her own face. Jamison worries about her.

Back in the conference, a young man performs some songs on a guitar, then an Australian doctor speaks. The doctor condemns other professionals who claim the patients are experiencing “delusions.” Jamison is uncertain of the man’s veracity but observes how his words continue to bind the community together, giving them a sense of belonging.

Jamison states the point of her essay is not to uncover the truth about Morgellons disease but to think about the “prerequisites for compassion. […] Do people have parasites or claim to have them? Do they understand or believe themselves to have them?” (39). She compares the complexity of Morgellons disease to an itch, which lights up the same signaling pathways in the brain as are associated with addiction and the sensation of which is tied to both physical and mental stimuli.

Jamison steps out of the conference and interrupts an argument between two men: Paul and Lenny. Paul is an electrician who claims to have used a laser on a woman’s hand and rid her of her Morgellons disease, clearing out the infection and destroying eggs. Lenny is resistant to Paul’s claims, telling him the condition is a virus and asserting that “I would have chopped off my hand, if that’s what would have stopped it from spreading to the rest of my body” (43). Jamison describes Paul as heavily scarred, with an ear that looks as if he has damaged it to remove something. Paul believes he contracted Morgellons disease from chigger bites on a fishing trip, and notes his sister, who initially thought Paul had a substance use disorder, is now a source of comfort after she learned about Morgellons online. When Jamison sits behind Paul for a presentation, she watches him scroll through pictures of his own damaged body and the treatments he has tried. She reflects on his profound loneliness, even when surrounded by people like him.

As Jamison leaves the conference, she finds herself very conscious of her body and whether she is itching. She has phantom moments in which she finds foreign objects on her—blue strands and minuscule spines—and is briefly afraid she has contracted Morgellons. She calms herself and uses logic to dismiss this fear but is caught between disbelief and paranoia. At the conference, people bring up concerns about contagion, which brings with it concern for their loved ones and a macabre hope that it can spread and will validate their experiences.

Jamison discovers the “Pets of Morgellons” website, which is dedicated to pets of people who have the disease and who have the disease themselves. She reads captions of pictures, including one of a dog who had to be euthanized as a result, although Jamison speculates on if the death was because of something else. Jamison transitions to the next day of the conference, which begins with a Japanese documentary about Morgellons. Then she speaks to a woman named Sandra, who shows her videos and images of larvae she claims to be coming out of her skin and shares her belief that the fibers are collected by the larvae to make cocoons. Jamison observes an interlude in the conference in which a joke sheet is passed out, providing levity for those with Morgellons and giving them an opportunity to reclaim some dignity after being mocked for their beliefs. Kendra’s consultation with the high-powered microscope confirms she has thread around her eyes, and Jamison wins a small microscope in a drawing, which she gives to Sandra. Then Jamison leaves the conference early, needing an escape and feeling ashamed on some level.

As Jamison leaves the conference, she reflects on the people she has met. She wishes they could join the non-sick people and live without restraint. Even as she thinks about these people, she is torn because, as compassionate and empathetic as she feels, she does not necessarily teeter into the realm of belief. She shares the history of the word “pity,” derived from “piety,” and delineates a clear line in her disbelief: she does not believe the Morgellons patients when they describe the causes of their symptoms, but she does believe the symptoms exist.