When news broke Tuesday night that music legend Joni Mitchell had been rushed to the hospital, the Internet feared the worst. Authorities found Mitchell unconscious inside her Bel Air home—releasing few other details about the events leading up to it.
Now reportedly resting comfortably in the intensive care unit, fans worldwide have breathed a sign of relief. But for Mitchell, who suffers from a rare disease that prompts “alien” fibers to grow under her skin, “rest” is relative.
The 71-year-old has long spoken to the media of deteriorating health; something she cites when asked why she no longer performs. But in questioning her health struggles, many fail to explore what, exactly, causes them. The normal ailments that come with age have no doubt contributed—perhaps prompting the ride to the ER.
But there’s something else that’s kept Mitchell offstage. A medical condition so mysterious that the Centers for Disease Control and Prevention, along with doctors worldwide, doubt its existence: Morgellons.
The condition is as rare as it is enigmatic, affecting just 1,400 people in the entire United States. Sometimes referred to as a psychological disease, the main symptom is the belief from the sufferer that they are infected or contaminated with something, be it a parasite or inanimate object. The only physical manifestations are colorful mini fibers under the skin and sores that resemble dermatitis.
Largely considered to be a delusion, it’s a difficult experience to capture. In Mitchell’s case, it’s easiest to visualize it on stage.
Imagine you’re at Madison Square Garden, singing for thousands. The music is blaring, the lights are shining, people are rocking out to your singing, and then—all of a sudden—you feel the itch. It feels like something is crawling on one leg, then your other leg, then your back. Spiders have begun creeping across your limbs, rashes spread over your face and under your skin. You feel infected, infested, and literally want to crawl out of your body.
Morgellons, in many ways, is a living hell.
Most in the U.S. haven’t heard of the disease, in part because doctors have yet to find a medical explanation for it. The condition was brought into public light around 2002 when the Morgellons Research Foundation successfully lobbied members of the U.S. Congress and the U.S. Centers for Disease Control and Prevention (CDC) to investigate the condition.
In adults, the disease is more generally referred to as delusional parasitosis (DP). Many patients with Morgellons strongly reject the idea of their condition being seen as a derivative of DP, and believe that it is a poorly understood dermatological condition rather than a psychiatric disturbance. Thus, in many cases, Morgellons is referred to as an “unexplained dermatopathology.” One of the key distinguishing characteristics between Morgellons and DP is that patients with Morgellons may report an infestation with inanimate objects or strange cloth-like fibers.
There are two parts to DP. The first is the delusion. Patients with DP have a very specific delusion, defined as a person’s belief that cannot be corrected by reasoning, persuasion, or logical argument. The second part is the substance of the delusion. In those with Morgellons, the fixed belief is that the person is infected with “bugs” such as parasites, bacteria, mites, or fibers. Some even belief they are infested with inanimate objects.
Those who have the recurring thought present to primary care doctors and dermatologists with rashes, skin excoriations, and wounds. All laboratory tests and pathologic exams return negative. Patients don’t have infections, bugs, or other infestations. Many times the mysterious “fibers” appear to be nothing more than cotton.
One of the biggest studies on the phenomenon was conducted by the CDC on 115 patients with unexplained skin lesions or skin sensations accompanied by patient-reported fibers or other inanimate materials. The results were as expected, no abnormal findings, no swarms of parasites. A similar study from the Mayo Clinic in 2011 studied 108 patients with similar symptoms. The results were the same: no evidence of skin infestation.
Current treatment for disease varies widely. Best medical practice would suggest that patients pursue psychiatric care to examine the source of the delusion and treatment with appropriate medications. Patients who reject the notion of a psychiatric cause have turned to alternative therapies and some even veterinary medications designed to rid animals of certain types of infections.
Mitchell, who has released 19 original albums and received eight Grammy Awards, has been through a tremendous amount. It is clear that her diagnosis of Morgellons prevents her from being able to participate as a performer. The first mention of her disease in the press came in 2010 when the Rock and Roll Hall of Famer was forced to opt out of singing “Both Sides Now” at the Vancouver Olympics because of her illness—something she referred to then as “an incurable disease that seems like its from outer space.”
“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. My legs would cramp up, just like a polio spasm. It hit all of the places where I had polio,” she said at the time. “Morgellons is constantly morphing. There are times when it’s directly attacking the nervous system, as if you’re being bitten by fleas and lice.”
Mitchell was aware at the time, and is likely even more now, that many in the science world doubt her disease to be real. It’s a side that, for once, she refuses to see. “It’s all in the tissue and it’s not a hallucination. It was eating me alive, sucking the juices out,” she says. “I’ve been sick all my life.”