Republished on request ~
When my mother was dominated into a meek shadow of herself, I was the one who thought that she actually might have something to say that was not being heard. As I grew up, her eccentricity grew into full blown psychosis and eventually she was diagnosed with schizophrenia. She got treated, and I lost the lively, if sometimes bizarre person that was my mother into a submissive, depressed shadow…… She got a lot of medicines, but no one who felt that what she wanted to say was worth listening. In my eyes, it is the problem and her behaviour just the symptoms. My main feeling in this situation is that as a daughter, by not believing her or appreciating that she had her own perspective, I failed her.
What does this have to do with Morgellons? Well, I’m a behavioural scientist, not a medical one, so what I’m looking at is behaviour. If there is a whole bunch of people behaving out of the ordinary, its enough to spark my curiosity as to what is happening.
I first heard of the Morgellons disease on some site a few years ago as I StumbledUpon and scanned through a page that seemed creepy. Fibres coming out of the skin, depression, fatigue, joint pain ……. uh, whatever and moved on. I coincidently came upon some page that talked about Morgellons as “delusional parasitosis”—a mental health condition characterized by the belief that one has parasites or bugs crawling on one’s skin…. oooookay, this was something I could maybe relate with if I read descriptions rather than the exotic label. So I read around. This is about 2-3 years ago.
As I searched, I found images and images of fibres with “features” like claws, nodes and what nots described. I could make out vague similarities in the shapes, but hey, I’m no authority on such stuff. What remained in my mind was the way people wrote. I could imagine entire lives being taken over by this fantasy, if indeed it was one. Could visualize people isolating themselves to avoid spreading it to their loved ones, frantically cleaning their homes, and bodies over and over constantly, peering worriedly through microscopes at stuff that was coming out of their bodies (whether it actually was or not, to them, it was), living in a constant state of itch and pain….. looking for treatment, but being laughed out of everywhere.
The Morgellons Research Foundation was created on the initiative of Mary Leitao a mother concerned for her son Drew who suffered from a sore in which she once found a strange fiber. She found many such fibers after that. She tried finding medical explanations and reached a dead end. Some discussion forums led her to other people with similar symptoms, and her quest for finding answers found momentum. She was the one to name this illness (which the medical people call a delusion, or a “self-inflicted condition”).
Her search for answers made her the target of criticism on one hand, while burdening her with the hopes of countless people counting on her to find a way.
Honestly, I did think some of the people delusional when I read stuff about aliens, conspiracies, and what not, but I see them more as a need for explanations of why they were suffering rather than an actual description of the suffering. Even if their diagnosis is a fantasy, they need attention. What they are going through is real.
Think of it as a person pulling out a gun. It may or may not be loaded. The person may actually be security, but if your imagination tells you its a terrorist, the heart attack you could get is real. Okay, this is an extreme example, but what I’m saying is that our perceptions are what we react to. They may not be real, but to us, they are. The earth rotates, but we still say sunrise.
I still have no clue whether Morgellons fibres actually come out of bodies or not, but one thing I am certain of is that there is something massive troubling a lot of people. My logic is not as medical as most sites have, but for whatever it is worth……
- All of us bloggers know how tough it is to get people to comment. How tough would it be for a large number of people to not only have similar ailment, but also spend a large amount of time obsessed with it, and posting so many images voluntarily?
- As a behavioural scientist, I see many people bid for attention, and while it is not impossible that this is a misunderstanding, or that people are generally “creating” their own symptoms through reading on the net and hyping themselves up, I find it unlikely that so many people can coordinate the nature of fibre photos. I am not discounting that floating fibers find their way into wounds routinely and that pulling out a fiber that’s caught in a scab is still painful.
- Most people don’t want to alienate themselves. Not by isolating themselves in the house, not by making repulsive disclosures about themselves, and not by continuing to do them in spite of ridicule.
- People also like to cling to authority, and perceive saying “I don’t know” as a loss of face. Its easier to reject what you don’t know, rather than face it and have to say that you don’t. Additionally, no one wants to deal with panic that they don’t know how to resolve and some of these people sound mighty odd. I don’t blame them – I get incoherent with a toothache within a couple of hours. If I itch, I can’t sleep. So it IS possible that doctors have been in a hurry to dismiss these people as crazy. Its easier for my self image for the question to be crazy than for me not to know the answer.
And so on…. Reminds me of the days when the earth was flat, and the telephone was dismissed as an entertaining but useless device.
On the other hand, I can understand how a doctor with a workload doesn’t see anything special in the lesions and wants the patient to meet a shrink. I wonder if any patients did, and what happened to their illness because of that.
I see this as a disease. People are suffering, they are not at ease, they complain of a similar problem, therefore disease. Its simple. If the “dictionary” doesn’t have it, maybe its time for an update. If there is no treatment, maybe its time for research.
An interesting discussion, let me not spoil it with a description.
Mayo Clinics have included Morgellons in their Some patients have tried to be as credible as possible and provided the logic and proofs many people seem to need before they can even consider something while others claim cures/relief treatments.
I was touched at the practical but sensitive article where I came to know that this research had been initiated. I was very happy to read that the CDC was undertaking research into the subject under the name of Unexplained Dermopathy. I felt that these people needed some answers.
Somehow, on this subject, all sides concerned (except – politicians!) seem to be so hooked to who is right and who is wrong (diagnosis and skepticism) that hardly anyone is in touch with the fact that these are people suffering or being shocked by such claims, and people’s beliefs that are being ridiculed.