Morgellons disease is an enigmatic disorder surrounded by misinformation and cynicism. It is extremely difficult to separate fact from fiction when it comes to Morgellons, a problem compounded by the scant knowledge that exists concerning its cause, symptoms and treatment. It is a relatively young disorder, first discovered in 2001 by a concerned mother; despite it initially being written off as Munchausens by proxy, thousands of other sufferers have come forward in the years since. For a disease with such a specific, unique set of symptoms, the fact that it is being ignored by the medical community at large is a constant source of frustration and bewilderment for patients.
With so much confusion surrounding Morgellons, it can be helpful to try and separate the myths from the facts; although we don’t know everything about the disease, there are certain incorrect trains of thought that can happily be derailed, and other common misunderstandings that patients or potential patients can avoid.
1 – Morgellons is a mental health disorder
This is absolutely the biggest myth surrounding Morgellons, and the one that patients have to fight back against most times they consult a medical professional. Ever since its inception, Morgellons has been diagnosed as a mental disorder, with the physical symptoms being explained away under a variety of colourful causes. The most common one is delusional parasitosis, a condition in which the patient believes that bugs are crawling around under their skin. One of the predominant symptoms of Morgellons is a constant itching sensation, which is where this flimsy explanation comes from. However, it completely ignores the two very physical symptoms of Morgellons, the first being copious lesions and rashes on the skin, and the second being the strange fibres which protrude out of the lesions. The constant suspicions and disbelief, combined with the relentlessness of the symptoms, can indeed have mental ramifications for patients, leading to depression and anxiety; but Morgellons should certainly not be categorised under a mental health disorder.
2 – Morgellons is self-inflicted
The corollary to the first myth is that Morgellons is somehow self-inflicted; that the dozens lesions and sores are the result of constant itching, irritating the skin without giving it a chance to heal. Thus, Morgellons is often viewed cynically as a self-fulfilling prophecy. You hear about the disease through one channel or another, believe you suffer from it, start noticing itching sensations, and then scratch excessively, leading to sores and lesions across the whole body. The bizarre fibres are explained away as pieces of fabric which get caught in the open sores, and provide another physical ‘symptom’ for the patient to obsess over. In fact, this narrative often goes in reverse; many patients first notice the lesions and sores, then the strange fibres; after being dismissed by their doctor as anxious or obsessive, they seek help online, and only then do they achieve some mental relief when they their strange collection of symptoms has a name: Morgellons.
3 – We have no idea where Morgellons comes from
While it’s true that we don’t actually know what Morgellons is, specialists have been busy researching its origins over the last few years. It is believed that the disorder is linked to Lyme disease, another contentious condition which divides the medical community. The most bizarre aspect of the disorder are the strange fibres that protrude from the lesions; considered testing on these odd formations have discovered them to be comprised of keratin and collagen (the same proteins that make up hair and nails). Moreover, samples taken from Morgellons patients consistently show the presence of Lyme disease, leading experts to believe the two are very much interlinked. It seems to be a case of Lyme preceding Morgellons and not the other way around; in fact, very few Lyme patients have Morgellons, while almost all Morgellons patients tested have evidence of long-term Lyme.
4 – Morgellons sufferers are predominantly found in California
For some reason, Morgellons has been predominantly associated with middle-aged women in California. While the disease does have a large presence in the West Coast state, since its discovery in 2001, Morgellons sufferers have come forward from virtually all states in the U.S., and from many other countries. As the evidence shows that Morgellons is closely linked to Lyme, it’s not unreasonable to assume that there are sufferers, or the potential for sufferers, everywhere that Lyme is present.
5 – No one but the sufferers believe Morgellons is a real disorder
Faced with indifference or patronisation from doctors, it is easy for Morgellons patients to assume that no one believes that the condition is real, and that no one cares about their treatment. This is not the case; despite widespread cynicism from the majority of the medical community, there are doctors and medical professionals who fully believe the disorder is very real, and are focused on finding a way to explain and treat it. One such organisation is the Charles E. Holman Foundation; they are a grassroots community dedicated to informing the world at large about Morgellons, while simultaneously focusing on finding a cure.
Ultimately, there is still a lot to learn about Morgellons, but the first battle is separating myth from reality, spreading the word about it, and getting it legitimised as a serious, physical condition by the medical community at large. Only then will the path to a total and complete cure open up.