Chris M. Daley, PhD

Living with Morgellons Disease and Medical Dismissal

Book in Progress

Routledge, Expected 2027

Morgellons Disease is labeled as “delusions of parasitosis” by the mainstream medical community, led by the United States Centers for Disease Control and Prevention. This condition is characterized by the belief that there is something crawling under your skin or that you are infested with parasites with no evidence of this being true. 

Individuals who have Morgellons Disease have these feelings, but they also have evidence that there is something else going on. They have microscopic filaments growing out of their skin made of keratin and collagen, natural substances produced by the body, but in this case growing in very unnatural ways. These filaments can be blue, red, black, or clear. They fluoresce under UV light and sometimes have a glittery appearance. Morgellons patients have been told by gastroenterologists and gynecologists that these filaments can be seen on colonoscopy or pelvic examination. Veterinarians have seen these same filaments emerging from household pets.

But Morgellons patients are regularly told by physicians that they are delusional and require psychiatric treatment. They are often dismissed without even undergoing an examination.

Is Morgellons Disease real? Yes, it is real. Real people suffer from it every day in many different parts of the world. These are not crazy people. They are just like everyone else, but are suffering from something terrible and debilitating. Not only do they experience these filaments growing out of their skin, but they have open lesions on their skin that itch and are painful. They have incapacitating fatigue, demonstrable changes in mental acuity, and sometimes severe joint pain, among other things. They also suffer from incredible stigma that causes them to feel ostracized by the medical community, friends, and even family members. They even become suicidal because of the severity of their illness and, more disturbingly, the fact that no one believes in them.

This book examines Morgellons Disease from the perspective of over 70 patients, family members, and providers willing to see Morgellons as a physical ailment. It describes how patients first realized that they had this condition and the process through which they were diagnosed (or not diagnosed). It explains their everyday lives from treating the symptoms to handling interactions with others to whom they turn for comfort and support. It attempts to show them as real people who need help, not stigmatization.

We provide an anthropological interpretation of Morgellons and the lives of its patients, arguing that it is better called Morgellons Syndrome. Though we cannot say what causes this disease, we provide the lived experience of its patients and the context in which it can be best understood. We end with our interpretation of Morgellons and a few words of advice to the medical community about how patients should be treated.

We implore physicians and other providers to listen to their patients and ask themselves why they can’t take the time to examine a patient’s skin under magnification rather than dismissing that patient as delusional.

Authors

Christine Makosky Daley, PhD, MA, SM
Sean M. Daley, PhD, MA
Ryan T. Goeckner, PhD, MA