01/29/2022
~The lesson of compassion and chronic disease - how Lyme disease and Covid-19 make us share experiences~
In the past I have been very sick with Lyme disease. Sick to the point where it just doesn’t make sense to those around you. What I hear often from others going through it are comments like “I look fine so no one believes me,” or “I’m beginning to think it’s all in my head.” I understand these statements, however I’m sure that my symptoms were 100% not “all in my head.” I remember days of waking up and just crying because I felt so terrible. I couldn’t think straight for the life of me. I once forgot my login name that I used every day for the years prior, which was simply my first name “Tonya.” My whole body hurt - my skin, my bones, my teeth. I was so physically drained the thought of standing up was overwhelming, yet I couldn’t sleep. I would toss and turn in discomfort all night and need to get up and change due to drenching night sweats. This went on for months, then after an exhaustive number of treatments would go away just to come back again later. The anxiety and fear I felt around symptoms returning and having to relive all of that again was terrible.
Since going through that experience I’ve dedicated a large part of my medical practice to helping others who suffer from tick borne illness. And I can say sadly but honestly that people with Lyme disease often get dismissed as being crazy, overreactive or hypochondriacs. How is it that someone could feel so bad for so long, especially when doctors keep telling them they are fine and cannot find anything abnormal?
However, something interesting is happening now as the world is grasping the numerous consequences of covid, including long haul symptoms. Our eyes are open to the reality of an infection causing us to be vulnerable, confused, ill and fearful. In general, people are not being questioned when they are sick with Covid-19. They are not being questioned in cases where their symptoms persistent and don’t resolve. I’m glad to see that. We shouldn’t have pushback about how we feel. But the parallel between longer lasting post Covid-19 symptoms and “chronic Lyme” or “post Lyme Disease symptoms” has recently struck me as being quite similar. The difference is that in one situation these symptoms are socially and medically acceptable, and in the other they are not.
I’m writing this just to share these thoughts, and more so in hopes that it will perhaps allow for more compassion and understanding of those around you who may be ill, even if they do not look it from the outside. Dr. Lauren Young has a great phrase for these kinds of considerations. She calls them “lessons of compassion.” Let’s add this lesson to the other silver linings we have all been forced to see during this difficult pandemic time.