By Ed Cara
At a public high school in upstate NY, a frightening ailment strikes the local student population. Over twelve teenage girls, one boy and one adult woman exhibit uncontrolled facial tics and muscle movements reminiscent of the well-known disorder Tourette’s. As the cases garner media attention from sources like The Today Show to famous environmentalist Erin Brockvich, the local health officials of LeRoy, NY come to their own conclusion based on the work of neurologists who examined 11 of the LeRoy girls; the schoolkids are likely under the grips of a scarcely understood mental condition called Conversion Disorder.
The symptoms of Conversion Disorder, while bizarre-looking, are actually the rare aftermath of a particularly stressful experience, the mind so psychologically traumatized that it begins to manifest physical ailments like blindness, tics and paralysis through no conscious fault of the sufferer. It’s a diagnosis that doesn’t come lightly as virtually every other possible cause must be ruled out before you can reliably lean on it being the culprit, and as of now, no biological, environmental or otherwise physical causes for the mystery disease have been found within the small town of 7,500, particularly one that would only affect the current toll of twenty mostly teenage girls. The likelihood is that these tics are individually a result of Conversion Disorder and collectively also the manifestation of a mass psychogenic illness, the symptoms spreading through the crowded population of a high school through the sheer unconscious power of the mind.
In a further twist through, while some of the sufferers are being treated for Conversion Disorder and improving, others refuse to believe the diagnosis. That’s because another but seldom-used term for what’s happening to the town of LeRoy, NY is called mass hysteria, and there are those in the town, the media and within the circle of victims themselves who are not willing to admit these symptoms are the result of a psychological problem.
“[I]t’s just so obvious that something is really wrong in her body.”- Parker, the mother of Lydia, one of the LeRoy girls
”I just want an answer, a straight answer.”- 17 year old Thera Sanchez on the Today Show
There has to be another explanation, they insist. It can’t just be all in their heads.
Earlier last month, the CDC, after an exhaustive two years, finally released the results of a study looking at self-diagnosed Morgellons sufferers. For those not in the know, Morgellons is the term coined by Mary Leitao in 2001 to describe the relentless assault of crawling, biting and itching sensations on the skin alongside the presence of fibers seemingly growing out of the body. For years, these Morgellons sufferers have insisted on the validity of their disorder while rejecting out of hand the assertions by dermatologists and psychologists that they’re instead suffering from a rare condition known as delusional parasitosis. The unsettling fibers poking out of their fresh itch-ridden wounds, coupled with the fatigue and mental confusion are the signs of something physical they insist, not the delusional ravings of madmen.
With growing numbers and even a few celebrity endorsements from the likes of Atlanta Braves pitcher Billy Koch and singer/songwriter Joni Mitchell, Leitao and her non-profit organization, the Morgellons Research Foundation (MRF), have been busy raising awareness through the media, internet forums, and conferences, desperate to give their disease a sheen of legitimacy. But many a doctor has bemoaned the increasing popularity of Morgellons as an accepted diagnosis, futilely trying to convince those who come into their offices with strangely colored fibers and vague symptoms that while they’re sick, it’s not as the result of ticks, toxins, or government-planted nanoparticles (all suspected causes of Morgellons), but rather a mental glitch that leaves the sufferer believing they’re infested with unseen parasites.
As time has gone on, the Morgellons community has gotten isolated and defensive toward the medical establishment, believing they’ve been ignored, mocked or in some of the more extreme circles purposefully stonewalled at the behest of unknown higher authorities, and as a result, begun turning to alternative (and unproven) treatments. Yet Mary and others like her have perpetually held out hope that their disease would someday be recognized as the very real physical malady they believe it is, that their cries for help would be heeded by experts and the mystery of Morgellons solved, while those on the other side of the fence has asked for help in establishing clear-cut proof that Morgellons is no novel disease, only the latest iteration of a psychological but not any less destructive dysfunction.
With that in mind, the CDC undertook a investigative study where they examined Morgellons patients with a fine tooth comb and comprehensive tests, carefully avoiding picking sides and alienating would-be volunteers from stepping into their specifically designated clinics in California, where a particularly large cluster of Morgellons cases occur. Though a similar study last summer by the Mayo Clinic proved lackluster for the Morgellons camp, some still pinned their hopes on the CDC validating their claims. On January 25, they came out with the conclusion that the
“unexplained apparent dermopathy demonstrated no infectious cause and no evidence of an environmental link.”
The tell-tale fibers?
“The materials and fibers obtained from skin-biopsy specimens were mostly cellulose, compatible with cotton fibers.”
The response from believers has predictably been unkind:
“People who suffer from Morgellons disease are NOT delusional no matter what the CDC or the mainstream press would have you believe”- Jan Smith of MorgellonsExposed.com
“Our government failed us and this reality is something to be concerned with due to the fact that the government is beginning to control so many things.”-Ginna898 on the LymeBusters board (Lyme Disease has been suspected to be connected to Morgellons by some in the community)
This is likely where the story of Morgellons ends, with those inflicted refusing to give in and only digging themselves deeper in an alternative reality of paranoia, mistrust and misplaced hope in unscientific treatments. Few are the people who will look at the data and discard their strongly ingrained beliefs of a physical cause. They’ll rely on unorthodox and discredited methods like chelation therapy, long-term antibiotic use and countless others. And lost in the shuffle will be thousands who doctors believe aren’t crazy or making it all up, but the victims of a real psychological illness with real physical consequences. The CDC study itself advises:
“[F]uture efforts should focus on helping patients reduce their symptoms through careful attention to treatment of co-existing medical, including psychiatric conditions, that might be contributing to their symptoms.”
As careful language as they use in the study, it’s hard to expect a dramatic shift from believers based on these results. Not only because a belief gained is rarely a belief lost, especially when it’s aided by the physical sensation of bugs on your skin, but because mental illness is still an often despised diagnosis to receive as a patient.
Though we would hesitate to offer a bus seat to the next coughing, sneezing or bleeding passer-by that comes along, there’s an even deeper-seated repulsion and disgust towards the idea of mental sickness. More than family, friends or community, it’s the mind that’s our most treasured domain, and when that domain is threatened in ourselves and in others, we become defensive, we deny, we mock and we stigmatize. The most frightening thing in the world is to not be sure of our world, and people do not appreciate being reminded of that fear by others. It’s reflected in our insults, our politics and our media.
Our political enemies are insane, our movie villains are psychopaths and in real life to be successfully marked “crazy” is one of the harshest blows that can be dealt to a productive member of society. It leaves you on the outside looking in, trivialized and ignored. After all, if our thoughts are error-free (they’re not), but yours aren’t, then there must be something intrinsically wrong with you. A germ, an injury or a tumor, these are things that happen to someone. Depression, schizophrenia or delusion, these are states that someone becomes and unconsciously we tend to blame others or ourselves for having succumbed to those disorders.
You don’t have to look for proof of that much further than the word hysteria, which was originally used to describe any woman who was seen as uncontrollable, emotional and a troublemaker. We’re not so far removed from the days of insane asylums and abandoned psychiatric wards where people were treated like sub-human creatures to be discarded or experimented with. It’s why those in the psychology and sociology community have pushed to reduce the stigma of mental illnesses in recent times.
With all the negative attention centered around the idea of mental illness, it shouldn’t come as any surprise that some in the town of LeRoy or Morgellons sufferers are hesitant to call their disease a psychological condition, that ‘it’s all in their heads’, even as doctors reassure them that a mental malady is not any more their fault than getting bit by a mosquito and getting malaria is. They see it as their fault, or assume others will. And the harder you attempt to convince them of the true nature of the disease, the further they’ll retreat back into their own now even more insular world of conspiracy and paranoia.
These aren’t crazy people to be shoved aside, they’re flesh and blood men and women stuck in the grip of an paralyzing condition that can’t be reasoned with, unwilling to admit their reality isn’t quite what they think it is, in part because we’ve so afraid to do so and in part because we as a society still treat the idea of mental illness as something that makes you less than human, makes you uncounted.
It’s extremely disheartening to look at the websites, forums and the youtube videos of people suffering from Morgellons, and to know that they’ll likely never get the help they need. It’s even more disheartening to realize that Morgellons is just a particularly vivid example of how mental disease is seen in the public consciousness and there are plenty of less flashy but equally devastating psychological conditions that people are hesitant to seek treatment for. Like the mental illnesses one in five Americans were afflicted by in 2009 alone.
Currently, the town of LeRoy, NY is still dealing with the flood of media attention brought to it over the past year while questioning the numerous environmental disasters that have struck the town over the last several decades. From staph infection to fungal pesticides, there are still those who believe the LeRoy cases can’t be Conversion Disorder.
As of February 15th, the Morgellons Research Foundation website run by Mary Leitao without notice shut down, stating that they would no longer take active donations and redirecting all visitors and funds to the Oklahoma State University Foundation to support their research into Morgellons.