Beyond all that, being told it's all in your head when you feel sick is bound to be hurtful, says one Morgellons patient who happens to be a clinical psychologist working with chronic-pain patients, who are in doubt themselves. The hurt leads to contentious encounters with doctors, who then feel more justified than ever in seeing the patients as primarily psychiatrically disturbed. Indeed, the medical literature on delusional parasitosis is full of discussion about how to broach the subject without alienating the patient. An article on Morgellons in the November 2006 issue of the Journal of the American Academy of Dermatology actually argues that Morgellons is a gift of sorts—a way of suggesting the delusional parasitosis diagnosis without having to use the off-putting word "delusion."
Casey says her stance on Morgellons is legitimate because of the many cases she has seen. Most doctors opining about the condition—Craft, for instance—have seen just a handful of patients at best. "I think it's a disgrace," she says of medical peers who have dismissed the patients without studying the phenomenon in full. Physicians are busy and have about 10 minutes to spend with a patient, she adds. They want to walk into a room, know what's going on right away, and write a prescription. Something unusual is time consuming and difficult, she says, and many doctors don't have time.
Besides, doctors are trained to find an answer. Many will make a diagnosis of delusional parasitosis or hypochondria more readily than conclude an office visit without a diagnosis. Nor is the system necessarily set up to investigate an unknown quantity. "If you send a fiber sample to lab, the report will often come back saying textile contaminant," says Casey. But she watched one laboratorian label a fiber by simply looking under a microscope. "I said, 'How can you tell?' And he said, 'I'm looking at it.' And that's how it's done in every lab across the country." That's why she asked forensic fiber experts to take a look.
On a deeper level, the structure of modern medicine can discourage examination of complex, multisystemic disorders. Most doctors are still poorly prepared to address illnesses with both physical and psychological components. "Your average physician does a one-month rotation in psychiatry in medical school," Bransfield says. So when there's a disorder that has physical and psychiatric symptoms, physicians often don't understand how to put all the pieces together. "One way to think of it is that there's quite a bit of cross talk between the immune system and the nervous system," Banfield adds. "But there isn't a lot of cross talk between psychiatrists and immunologists and infectious disease doctors. The way we've compartmentalized specialties contributes to our difficulty in dealing with problems like this." When diagnoses are in this gray zone of understanding, they often end up in the field of mental health, he says, even when there's a solid physiological cause.
Down the Road
It's hard to say yet which pattern the Morgellons phenomenon will follow. Will it be the next Lyme disease, validated by the medical community? Or will its victims reside in diagnostic purgatory forevermore? Medicine is full of phenomena that sounded like psychological ailments when first proposed but are now linked to invasive pathogens. Ulcers are caused by spirochetes, not stress. Syphilis is a bacterial infection that reaches the brain, not a kind of insanity. Tuberculosis is another infectious disease, not the psychosomatic illness it was first thought to be.
But while these stories become bits of medical lore, and the names of the scientists who made the discoveries are now well-known, the stories of the patients who were caught in the middle of the confusion are rarely told. Mary Leitao says she never wanted to be an activist. "I'm just a scared mother," she says. And she wants an answer, whatever it is, soon. Not long after Drew became symptomatic, his two older siblings, Jeremy, 16, and Samantha, 17, started exhibiting signs of it, too. Samantha is plagued by cognitive problems, fatigue, and joint pain. She was once in the gifted program; but now, in her senior year of high school, just started homebound instruction. Jeremy also suffers from fatigue and some cognitive problems. But he pushes himself to get to school. "I'm not sure how much longer he can push himself," says Leitao. Drew, now 8, doesn't seem to be cognitively afflicted, but his skin, she says, is riddled with sores and scars.
There are other families in which more than one person suffers from the symptoms too, says Leitao. But rather than see that as an indication of the disease's infectious nature, the medical community has labeled it "folie a famille" (madness of the family). They have, she says, an explanation for everything.
Diseases Under Fire
The controversy over Morgellons is just the latest example of medical establishment skepticism. Diseases greeted with incredulity in recent years include:
Chronic Fatigue Syndrome: A disorder characterized by persistent and crippling fatigue unrelieved by rest, tender lymph nodes, trouble concentrating, muscle and joint pain, and headaches. Lab tests may reveal nothing unusual.
Status: Generally accepted. The CDC recognizes it as a legitimate disorder.
Fibromyalgia: A chronic pain disorder in which sufferers complain of aching in their muscles, ligaments, and tendons. It may be triggered after an illness or after injury impacts the way the nervous system processes pain.
Status: Mostly accepted; some doctors are still skeptical.
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