Kendell’s Narrative
Unfortunately, the guilt, shame, and stigma surrounding Mental and Chronic illnesses are oftentimes more debilitating to the person than the diseases themselves. One of us, Kendell, suffers from a misunderstood condition called Lyme disease or Borrelia Burgdorferi. It is not only a chronic physical illness—Lyme disease can present as a mental illness when it enters a person’s brain. This is called Neurological Lyme disease. Symptomatically, Lyme can be all over the map. It has often been called the “great masquerader,” because it does not present with a specific set of symptoms. Kendell has suffered from Chronic Neurological Lyme disease for the past 13 years; however, the doctors believe it was latent and undetected for many years before that. She also suffered from several other tick-borne diseases such as Babesiosis, Ehrlichiosis, and Bartonella. They all present somewhat similarly—hence it is almost impossible to tease out which disease was causing each symptom. For ease, we will use the word Lyme as the catchall word to represent all these diseases.
When Kendell was first diagnosed, she knew little about the disease, and mistakenly thought it would be an easy fix. Thirteen years later, she has come to realize the extent to which this disease is misrepresented and misunderstood. Many doctors will not admit that “Chronic” Lyme exists. Insurance companies won’t cover it, because they would be out billions if they admitted to its existence. Typically, physicians will only treat the disease with a course of antibiotics for one month—which is all the CDC’s guidelines require. After that, patients with Lyme disease often find themselves on their own financially and often times they also medically on their own as well. Guilt and shame are almost always associated with this disease—since it purportedly does not exist and doesn’t warrant any kind of real attention or even much compassion.
