A bug in the system

By Ed Cara

You wake up one morning with an unsettling feeling crawling all over your skin. It’s the fifth such morning you’ve had this week. As you head over to the bathroom mirror, the itching starts back up. It’s rooted deep inside and no matter what you do, you can’t stop yourself from trying to dig it out.

It’s to no avail as the itchy spots have steadily become raw and bloody sores. Even more alarming is what you’ve found in those sores; tiny unexplainable fibers that have seemingly erupted out of your body without any provocation. By now you’ve begun your own little macabre collection of the fibers and flakes of skin that have peeled off, hoping that they’ll be able to tell your doctor, or really just anyone, exactly what’s happening to you.

As you rinse off for work, that unsettling feeling of yours suddenly turns into one of terror. You stand there frozen, drenched in both sweat and water, almost unwilling to acknowledge the sensation you’ve been narrowly ignoring for the past five days but most certainly just felt creep all along your upper right arm. There’s something inside you. And it just moved.

As much as that sounded like the beginning of a Stephen King novel, that little story up there is actually a very disturbing reality for thousands of families across the world. It’s called Morgellons and it’s been slowly rising in victim count over the last decade. Trouble is, for the sufferers of Morgellons, their very disturbing reality may be a very disturbing delusion.

The beginning of Morgellons trails back to 2001.  A concerned mother, Mary Leitao, brings her 2-year-old child to the local doctor with a strange set of symptoms: skin lesions on the lips and body that won’t heal, fatigue, itching, the sensation of parasites underneath the skin and of course, small fibers embedded all over her son.

Much to her chagrin however, Mary Leitao repeatedly found herself turned away by those local doctors. Whether they were pediatricians, dermatologists or infectious disease specialists, no one seemed to have the answer to her son’s condition, either prescribing ineffective treatments for eczema and other skin conditions, or even worse, diagnosing her son as completely healthy while suggesting that Mary herself be psychologically evaluated for Munchausen’s by proxy (which any big fan of House will recognize as a mental disorder that makes someone obsessively exaggerate or create medical ills to receive attention from others; the proxy applies when you do so with your children as opposed to yourselves). Mary Leitao was essentially being told that she was suffering from a mental delusion.

Yet to Mary, a former biologist, what her son was going through was no trick of the mind, either hers or her son’s. She continued seeing doctor after doctor, each time becoming more discouraged by those she believed were supposed to help her and her family. So in her desperation, she reached out to anonymous internet forums where she described what was going on to her son and to her surprise, found people who had faced similar battles with their body. Soon she created her own site and non-profit organization where others like her son could unite under and not only understand their disease but also call to attention the seriousness of it to medical professionals and the general public: The Morgellons Research Foundation (MRF).

And unite they have, attracting thousands of individuals who found their guiding beacon in Mary Leitao and the MRF. Much like Mary’s experience with her son’s mysterious symptoms, these people found their condition repeatedly waved off by the medical establishment. No matter how much proof they had gathered in the form of fiber samples or large, unexplained sores and lesions dotted all over their body, the doctors refused to believe anything biologically was wrong with them. Now with the label of Morgellons (the name of an ailment Mary had found described in a 17th century medical journal and which had vaguely similar symptoms), they could finally latch on to something concrete. A name to match their terrifying experiences.

But doctors have had a label for their condition for over 70 years, and it’s sadly the very nature of that condition that has served to only further drive a wedge between its victims and the actual help they’re looking for. It’s called delusional parasitosis (the belief that your body’s riddled with parasites when it isn’t), and even at first glance, its trademark symptoms are remarkably similar to that of the common Morgellons’ sufferer. The unexplained lesions are self-inflicted wounds caused by obsessively constant scratching, the biting/itching/crawling sensations are known as formication, the collection of fibers, insect specimens and other various proofs are nothing more than lint, debris (bodily and otherwise), or even, in the case of one man who had sworn he had captured the bug burrowing down into his body, pubic lice that just happened to wander into those sores.

But the incredibly unnerving and deeply demoralizing belief that something terrible is happening to you? That part is true, it’s just a case of mistaken identity; it’s not a parasitic infestation of the body that afflicts the victims of Morgellons, but rather one of the mind. It’s the spread of an idea as simple as it is contagious and destructive

That’s why dermatologists face such an uphill climb when dealing with Morgellons patients. Telling someone who has spent the last few weeks believing wholeheartedly they’re being destroyed from the inside out by something alien that it turns out they’ve actually been manifesting a delusion (through no fault of their own) is about the quickest way to ensure you have a pissed off, defiant and defensive patient. One who will refuse to go see a psychologist and/or take the mild doses of antipsychotics that they’ll need; because they know they’re not crazy, they know for a certainty it’s not all in their head, and if their doctor is saying otherwise, then he’s either wrong, ignorant or corrupt.

And it’s why Mary Leitao continued to see those doctors, hoping to find the one who would tell her that she was right, that her son was physically sick, not the victim of a psychological glitch. But when she started the MRF and gave a rare and barely understood mental condition a new face lift, she also created her very own epidemic. Belief is a powerful thing, and by the simple act of giving a delusion a different name and legitimizing it as a physical, not mental, malady, it made it that much harder for doctors to convince their patients of the real problem. Through the internet, Mary Leitao has unknowingly spread the idea of Morgellons to tens of thousands around the world; where previously a victim of delusional parasitosis might have reluctantly but successfully taken the medication needed to treat their disease, now they’ll reject it under the pretenses of knowing that they don’t have a delusion, they have Morgellons and it’s modern medicine’s fault that they can’t understand that. Ultimately Morgellons is both a testament to our nature for seeking out answers as well as to our unwillingness to accept that our search might just lead us down a path we’d rather not take.

The community of Morgellons sufferers have only gotten stronger in their belief in the years since Mary started up the MRF. They’ve even managed to successfully petition the CDC to take up an extensive and several year-long study examining and researching the claims of those afflicted with Morgellons to find the true cause, with the study having recently been completed and set to come out any day now. If it’s anything like the Mayo Clinic study done this May though, than the results probably won’t be encouraging to the MRF and its supporters. Not that it much matters; the truly sad thing about human nature is that creating a belief takes much less effort and time than getting rid of one does.

In the end, our minds are every bit as frightening an enemy as anything nature can throw at us.

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