Reclusive singer Joni Mitchell, 71, was hospitalized after fainting in her Los Angeles home on Tuesday. The cause of her collapse hasn’t been confirmed, but since the early 2000s, Mitchell has been complaining of a mysterious health condition called “Morgellons disease.” Thousands of people in the U.S. blame Morgellons for symptoms like uncontrollable itching and the sensation of crawling and biting beneath the skin. In her 2014 memoir, Mitchell wrote, “I couldn’t wear clothing. I couldn’t leave my house for several years…Sometimes it got so I’d have to crawl across the floor.” But there are no biological diagnostic criteria for Morgellons, and most doctors believe it’s psychosomatic.
In trying to draw attention to Morgellons, Mitchell has been carrying on the work of Mary Leitao, a one-time lab technician from South Carolina. In 2001, Leitao’s 2-year-old son, Drew, developed sores on his lip and complained of “bugs”; Leitao looked closer, with the aid of a toy microscope, and detected what she believed to be multi-colored fibers growing from his skin. Leitao took her son to doctor after doctor, but none of them could find anything physically wrong with him; some suggested it was Mary who needed (psychiatric) help. Leitao didn’t agree, instead launching a campaign to force the medical community to recognize Drew’s illness. (She named it “Morgellons” after a 17th-century French term that she believed described a similar disease.) In 2004, Leitao set up a website describing her son’s illness, and before long, comments started pouring in– it seemed thousands of other early Internet-users had been quietly suffering from Morgellons. Empowered, Leitao and her husband set up a research foundation for the disease and began asking for donations; more than 11,000 people signed on, either as patients or relatives of Morgellons sufferers.
With pressure mounting, the Centers for Disease Control agreed to investigate, and in 2012 researchers examined 115 people who identified as Morgellons patients. They found “no common underlying medical condition or infections source” and “no parasites or mycobacteria.” Those mysterious fibers? Probably just lint from their clothes. And though Morgellons patients often presented with physical symptoms like lesions and blisters, those wounds could be the result of their incessant scratching. The researchers did find some common underlying psychiatric conditions, though: Many of the patients had problems with addiction or depression, and about half used drugs. After the study came out, Leitao seems to have given up: She shut down the foundation and disappeared from the Internet.
Is “Morgellons” just another word for “hypochondria?” The Internet has been a double-edged sword for medicine. Online forums have been instrumental in helping patients of all kinds of diseases form communities, offer each other support, and swap tips for managing pain and symptoms; they’ve helped de-stigmatizing mental illness, STDs and AIDS. But some doctors complain that patients can be a little too empowered–diagnosing themselves based on WebMD or confirming each other’s dubious ideas. And psychological contagion is a real risk; hearing your symptoms described by others–especially well-respected celebrities–can serve to legitimize and exacerbate them. Two years ago, writer Leslie Jamison visited a conference for Morgellons sufferers in Austin, Texas. By the end of her trip, she was noticing symptoms in herself.