It didn’t take very long for those of us in the chronic illness community to recognize the MANY similarities between COVID19 and what we have already been living with for DECADES…especially the “long haul” symptoms. Thankfully those of us who also work in the root-cause (Functional, Integrative, Holistic) health space as doctors, nurses, bodyworkers, advocates, and/or coaches got right to work having lengthy discussions about how to best support this massive wave of people who could suddenly end up in the chronic illness population. We are ALL (patients and practitioners alike) trying to see this new awareness in the mainstream as a potential silver-lining of an atrocious situation.
As someone who has been abused and neglected by the conventional medical system since I was little I also have to acknowledge the anger I feel that every year 300,000-400,000 people are infected with Lyme Disease, with an estimated 2 million people living with Post-Treatment Lyme Disease “long haul” symptoms (NCBI / BMC Public Health, 4/24/19) IN THE U.S. ALONE. It literally feels like the meme shared on Instagram by “Tick Boot Camp,” a podcast raising Lyme Disease awareness, of all of the focus being on COVID19, while the many people with Lyme continue to be ignored. For YEARS most of us in the Lyme community have been feeling like, “HELLO, I am drowning over here…doesn’t anyone see me or care?!”
A recent TIME article titled “Have We Been Thinking About Long-Haul Coronavirus All Wrong?” featured a researcher with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) who had been wondering aloud with her colleagues for years, “What is it going to take for researchers to take ME seriously?” The response was dark but authentic, “The morbid answer, they hypothesized, was a pandemic. Since ME/CFS often follows viral infections, they feared it would take something as destructive as mass illness for the larger scientific community to take notice.”
The article touches upon hope for those of us with Lyme as well, “This burst of activity could have a significant impact, not only for ME/CFS patients but for people with other contested illnesses, like chronic Lyme disease and fibromyalgia. “The big issue diseases always overshadow the smaller ones,” says Dr. John Aucott, a chronic Lyme disease expert at Johns Hopkins University. “All the focus of everything is now on COVID”—but with that focus now extended to include long-haul coronavirus, there may be a ripple effect for similar chronic fatigue conditions that historically get little attention. Belief in long-haul coronavirus could translate to belief in other contested illnesses.”
It feels conflicted (to say the least) to feel a tinge of gratitude for a pandemic…almost as much as being thankful for the lessons and growth that being forced to the sidelines of life by a chronic illness does. I don’t know just how much hope those of us with chronic illness should hold out for this potential heightened awareness, but I do know this, we are here for the “COVID Long Haulers,” doing everything we can to make sure they feel seen, heard, supported, and BELIEVED!