The news in April 2015 that Joni Mitchell had been hospitalised following an unspecified “minor medical emergency” focused attention onto her struggle with Morgellons disease. However the biggest question about Morgellons disease isn’t how to treat it – it’s whether Morgellons disease even exists.
Morgellons is characterised by sensations of biting and crawling underneath the surface of the skin, sores and lesions, and the appearance of fibres in the skin sores. Where the controversy starts though is the cause of the biting and crawling sensations, and the source of the fibres.
The claim for Morgellons as a disease date back to 2001, when an American biology technician, Mary Leitao, started to research her son’s illness. He was complaining of “bugs” under his skin and had sores around his mouth, which his doctor had diagnosed as eczema. As well as researching past incidences of this condition (which led her to Sir Thomas Browne’s description from 1674 of a disease he called “the Morgellon”) she examined her son’s skin with a microscope and found it was covered in tiny red, white, black, and blue fibres.
When Leitao publicised her results she was contacted by other families and individuals who said that they recognised the symptoms as matching their own experience. The consensus that has arisen in the Morgellons “community” is that the disease is caused by an outside agency, although whether that is a parasitical, bacterial, or chemical is still undecided. There is also a belief that the fibres are an artefact of the disease, and that their eruption from under the surface of the skin causes the sores and lesions.
Joni Mitchell’s description of Morgellons, in an interview with the Los Angeles Times, is fairly typical of how sufferers describe the disease. “Fibres in a variety of colours protrude out of my skin: they cannot be forensically identified as animal, vegetable or mineral” she told the interviewer. Elsewhere she described how she “couldn’t wear clothing” or leave her house “for several years”. “Sometimes it got so I’d have to crawl across the floor” she wrote, “my legs would cramp up, just like a polio spasm. It hit all of the places where I had polio.”
Such was the pressure from sufferers the American Centre for Disease Control (CDC) funded a $1 million epidemiological study of Morgellons. Published in 2012 their report concluded that they were unable to identify any infectious or environmental source for the patients’ “unexplained dermopathy”. The CDC found that the fibres in patients’ lesions were simply cellulose fibres from their own clothing or surroundings that had been caught in a scab or sore, and that the scabs and sores were caused by the patients’ own scratching and picking.
In fact the report cast doubt on the existence of Morgellons as a distinct condition, and suggested that it was something that doctors were already familiar with: delusional parasitosis. Delusional parasitosis is a recognised psychiatric condition where people hold an unshakeable, but delusional, belief that they are infested with parasites. They may experience a crawling sensation on or underneath the surface of the skin, and can develop obsessive behaviour around inspecting and cleaning their skin. This behaviour actually becomes a form of self-mutilation, with the constant picking at parasites or fibres causing the lesions, and preventing them from healing properly.
However, because the belief is an “unshakeable delusion” patients will vehemently reject any psychiatric diagnosis, or indeed any diagnosis that isn’t predicated on parasites or external contamination. Viewed from this angle, the advocacy of the Morgellons community, and their rejection of the CDC’s findings, take on a different quality – one where confirmation bias may be playing a part in their belief that there is a cover up or conspiracy concerning “big pharma” or chem-trails.
They may also misunderstand the diagnosis of Morgellons as a psychosomatic condition – stating that its cause is in the mind doesn’t mean that the reality of the physical symptoms is downplayed or ignored. No matter what the basis though the reality of their suffering is undeniable – the obsessive examination and scratching, the open sores and scabs, the constant irritation, and the mental and physical exhaustion that can come with identifying so strongly as a Morgellons sufferer. The sadness is that they reject treatments that could alleviate their symptoms precisely because of the nature of their condition.
If you’ve found this interesting why not read about the positive effects the mind can have on the body, and its role in the placebo effect, and sign up for my monthly newsletter here with three stories every month on the quirky side of relationships and psychology.