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Morgellons disease has a fabled history that makes it a sensitive subject among patients and practitioners alike. Aside from puzzling physical symptoms, Morgellons disease is often accompanied by changes in a patient’s mental functioning as well, causing it to frequently be misdiagnosed as a form of mental illness – like Munchausen syndrome or delusional parasitosis. Whether a practitioner chooses to treat the physical symptoms or focus instead on treating the mind is a key difference in the patient experience. The best route for treating a person suffering from Morgellons disease is still being researched.
Morgellons Disease: Signs and Symptoms
Patients with Morgellons disease report a skin sensation to the feeling of bugs crawling beneath or stinging the skin, causing the skin to itch and become irritated. Another consistent symptom is painful sores, and patients report tiny black, red, and sometimes blue tendrils that resemble fibres or strings emerging from the sores or from healthy skin. Other patients with Morgellons disease report feeling fatigued and confused, and experience memory loss and depression.
Morgellons Disease vs. Munchausen Syndrome
Unfortunately, patients often have Morgellons disease misdiagnosed as Munchausen syndrome. Munchausen syndrome is a disorder wherein patients are dishonest with practitioners about having certain symptoms. Some people suffering from Munchausen even go as far as to self-harm to induce symptoms. This is typically characterised as attention-seeking behaviour. Children are particularly susceptible to experiencing Munchausen syndrome by proxy if a caregiver has convinced the child that they are ill when there is no evidence to support the notion.
Because the physical symptoms of Morgellons disease have yet to be thoroughly explained by the medical community, some practitioners are unlikely to ever diagnose a patient with Morgellons. Instead, it seems that Munchausen syndrome is a popular diagnosis for practitioners who don’t understand Morgellons disease. It can be very discouraging for someone who is genuinely ill to experience what might be Morgellons disease misdiagnosed as Munchausen syndrome.
A second common diagnosis received by patients presenting with symptoms consistent with Morgellons syndrome is delusional parasitosis. Delusional parasitosis is a psychotic illness causing patients to have the false belief that parasites, worms, or other insects have infested the patient’s skin. Since a person believing themselves to have Morgellons usually reports feeling incessantly itchy, some practitioners who don’t classify Morgellons disease as a real physical condition instead feel the symptoms are a result of mental illness, pursuing with psychiatric treatment options. Delusional parasitosis is rare, but usually occurs in people with hypochondria, and occasionally alongside other mental illnesses like schizophrenia or bipolar disorder. It can sometimes be a symptom of withdrawal from drugs or alcohol.
Mary Leitao brought Morgellons disease into the contemporary public eye in the early 2000s after her son was diagnosed with delusional parasitosis. The young man repeatedly complained of feeling bugs under his skin, and Leitao reported pulling fibres from sores on her child’s face, consistent with what other Morgellons disease patients report. After finding little support from the medical community, she initiated a very public campaign pressuring American Congress and the U.S. Centers for Disease Control and Prevention (CDC) to investigate Morgellons further. She was successful, but the CDC eventually concluded that Morgellons disease is more consistent with delusional parasitosis than any other theory.
The Toll of Misdiagnosis
The experience of having Morgellons disease misdiagnosed can be very damaging to a person’s mental and physical health. When a patient doesn’t feel heard or respected by their health practitioner, it can discourage a patient from following up when the treatment plan for a misdiagnosis inevitably doesn’t work. A series of misdiagnoses can lead to serious self-doubt, and for someone experiencing illness, that doubt can snowball into depression. What’s more, a patient runs the risk of beginning a treatment plan that can potentially do their body more harm than good if they involve unnecessary supplements and medications, or the wrong type.
What to Do if You Think You Have Morgellons Disease
If you are patient who feels they are living with Morgellons disease, but you’ve been misdiagnosed with Munchausen syndrome, delusional parasitosis or another ailment, there are a few ways that you might choose to proceed. The first step is to be sure to take care of any broken skin or open sores. Practitioners will be able to help you identify whether or not you’re at risk for infection if you have broken skin from scratching, and may prescribe something to prevent infection. Practitioners should always prioritise your health, and should assist you without judgment if you are in any obvious danger of infection or sepsis.
There is an extensive online community that can provide emotional support and share stories about things that have worked for them, but do proceed with caution as any medical information gathered there may not be scientifically sound. A combination of taking care of yourself physically and emotionally should be considered when seeking solutions. A mind-body approach to recovery will ensure that you’ve adequately considered your health from the inside out.