Suffering from any disease can be unnerving, especially when it comes to the U.S. health care system with its notoriously high costs and stringent insurance protocols. But for people with Morgellons disease, the onset of this particular disorder can create a whole host of issues separate from the debilitating effects of the disease itself. The main issue is that Morgellons isn’t formally recognized by any official health care body in America or abroad. Despite the Centers for Disease Control and Prevention (CDC) conducting numerous tests in the late 2010s, they could find no specific cause for the disease, with a number of results coming back inconclusive. Despite this, thousands upon thousands of patients across the world report suffering from the disease, a number that keeps increasing with every passing year. So what exactly can you do to further your case when you suffer from a disease that isn’t officially recognized by the health care system?
The first thing to be wary of is misdiagnoses on a family doctor level. This is often the first place that sufferers of any disease will seek help and clarification; referral to specialists is common after the physician does a few routine examinations and possibly bloodwork. However, many Morgellons disease patients have found themselves dismissed at this local level, and never have a chance to pursue further treatment. If you happen to suffer from the disease, you may find this strange; the symptoms of Morgellons are disturbingly physical and distinctive, often consisting of fibers and threads that appear to grow out from and under the skin. In addition to these fibers, patients are often covered with lesions and abrasions, and suffer from intense itching sensations.
What are the reasons for this dismissal, and what can you do to prevent it? The first reason is that Morgellons is not an “official” disease. It was named by Mary Leitao, a woman who first noticed the bizarre set of symptoms on her young son. When Morgellons is finally recognized by an official body like the CDC, it will most likely undergo a name change. Until that point, there is every chance that your primary care physician will not have heard of Morgellons disease. To compound this issue, when you doctor searches the internet for information, they will most likely encounter a wealth of articles detailing why Morgellons is purportedly false, has been dismissed by the CDC, and is most likely a delusion. As you can imagine, this is extremely unhelpful for patients, and it usually results in doctors dismissing their concerns or looking for a mental disorder-based reason for the presented symptoms.
There are a number of actions you can take to avoid this outcome. Even if you have researched your personal symptoms thoroughly and believe you have Morgellons disease, you are better off describing the symptoms, rather than giving the name of the disorder. As the name “Morgellons” is literally a handy term to describe the condition and has no medical basis, it doesn’t matter if your doctor hears it or not. It is also best to see your regular doctor, one who understands your medical history and personality. Morgellons is often frequently misdiagnosed as delusional parasitosis, a condition where patients believe that bugs are crawling around under the skin. Because of this bias, it is best to avoid any emergency room treatment, or opting for the first doctor you see; unfortunately, you are likely to be dismissed or recommended for further psychiatric evaluation.
As much as possible, keep calm and focused when describing your symptoms to a medical professional. One of the main tendencies Morgellons patients have is obsessing over their symptoms; when presenting to your health care professional, is best not to describe things in extreme detail. This is also true when considering specialists. As Morgellons disease prominently affects the skin, most people overly focus on that and immediately seek out a dermatologist. Unfortunately, dermatologists have not historically been accepting of Morgellons patients, despite the seemingly prominent fiber evidence of it being a physical condition. The best practice is to consult a trusted physician and give them a general overview of the symptoms.
When it comes to insurance and social security, Morgellons disease isn’t recognized as a legitimate condition as yet. However, if you can prove that your symptoms are as debilitating as some of the other conditions that are recognized, you can find success with your claim. Luckily, Morgellons has some pretty physical symptoms, and the family physician approach described above only serves to strengthen your claim. The Charles E. Holman foundation has been working hard on behalf of Morgellons patients all over the world from a grassroots level; you might find their breakdown of social security benefits useful.
Finally, it is also worth asking your doctor to test for Lyme disease. Recent studies have linked Morgellons disease with chronic Lyme; as many as 98% of patients in the study also tested positive for borrelia burgdorferi, the agent that causes Lyme. The reverse was not found to be true – so if you have Lyme disease, it doesn’t mean you automatically have Morgellons disease. Ultimately, we still have a lot to learn about this bizarre and disturbing disorder, and there is much prejudice to eradicate within the American health care system. Persistent visibility and patient support are key elements in the fight to legitimize Morgellons disease.