The narrative around chronic Lyme disease is shifting, bringing more validation to those who have been battling for recognition of their illness. Despite the progress, there is still work to be done.
The narrative around chronic Lyme disease is shifting. If you have chronic Lyme, you might read that sentence and roll your eyes. I understand if you do. For decades, Lyme warriors have been battling doctors, friends, family members, insurance companies, and the government for validation of their illness. For validation of themselves.
Yes, of themselves. Chronic Lyme is not, in fact, an identity, as was erroneously and hurtfully purported in a 2019 New York Magazine “The Cut” article that made the rounds again this summer. As I explain in my recent “What it Means to Live with Chronic Lyme Disease” blog post, chronic Lyme is a clinical diagnosis of persistent Lyme disease symptoms that must be made by a medical doctor. It is not a diagnosis of exclusion, a chosen diagnosis, or a chosen identity. No one wants to be a Lyme warrior, but when they’ve been sick for months or years due to delayed diagnosed, complications with co-infections, immune dysregulation, treatment-resistant infection, or other factors, Lyme disease does become part of their identity. Thus, when their illness is denied, it feels like part of themselves is denied.
I continued to sometimes wrestle this denial even after I found Lyme literate doctors, my friends and family became Lyme literate, and I twice achieved remission. I still had to fight for validation from insurance companies, new doctors, and, often, the general public, whose narrative about Lyme had trickled down from what they heard from the government or in the news. Chronic Lyme was still a contentious term, one that I had to be careful to avoid depending on my audience. In articles, the term was often written in quotation marks, suggesting that it wasn’t real. Articles like the one in “The Cut” and others debated the veracity of the illness.
This was a reality for so long that many people don’t realize is changing. I was upset when “The Cut” article got shared on social media again this summer, because it’s old, fake news. In 2023, chronic Lyme hasn’t fully gained the acceptance the Lyme community would like, but the needle is absolutely shifting.
Take, for example, the recent Boston Globe article “Chronic Lyme Disease Research Gets Big Boost.” The title alone is cause for celebration, especially from a publication that has previously run articles questioning chronic Lyme or using alternate terms for it. (In fact, my first big Lyme-related publication was an op-ed in response to a Boston Globe piece almost a decade ago). In “Chronic Lyme Get a Big Boost,” the word chronic is not in quotation marks. It’s just stated as a name of a disease that desperately needs—and is finally getting—research attention. The article goes on not to question chronic Lyme, but to discuss its possible causes, which are being studied by the NIH.
While the article does loop chronic Lyme patients under the Post Treatment Lyme Disease umbrella—when the inverse is actually true—it doesn’t use the PTLD term exclusively, but instead uses liberally and without question the terms chronic Lyme and long Lyme. The article quotes, “In announcing the new grants, the NIH said it hopes that broadening scientific understanding of what causes chronic Lyme might help researchers decipher similar mysteries with other infection-associated chronic illnesses, like long COVID and myalgic encephalomyelitis, formerly known as chronic fatigue syndrome.” Thanks to long COVID, other long-haul illnesses like chronic Lyme are finally getting the attention and validation they’ve needed for too long.
A big part of the chronic Lyme debate has always been whether Lyme can cause persistent infection following a short course of treatment. Over the years, we’ve watched the science catch up to the lived experience of chronic Lyme infection. And while we haven’t heard a definitive “chronic Lyme is caused by chronic infection” from important stakeholders, we are hearing that infection is one of the possible causes of chronic Lyme, and that researchers are studying other causes like altered neural pathways, immune dysregulation and chronic inflammation.
To me, there are two important shifts here: the first is that chronic infection is being accepted as a legitimate cause of persistent symptoms. The second is that the other options are not necessarily being considered instead of persistent infection—when for years the pat line was, “chronic Lyme infection doesn’t exist, so it must be something else”—but possibly in addition to infection. In other words, the causes of chronic Lyme disease are probably not mutually exclusive.
This is evident in the updated wording on the CDC website, which says, “The state of the science related to the persistent symptoms associated with Lyme disease is limited, emerging, and unsettled. Additional research is needed to better understand how to treat, manage, and support people with persistent symptoms associated with Lyme disease.” While the CDC isn’t using the term chronic Lyme, they are validating the experience as well as the need for better research to understand it. Again, the needle is moving in the right direction.
With Lyme treatment and recovery, everything happens in baby steps (sometimes forward and sometimes backwards). We want to get immediately better, but when you’ve been sick for a long time, there isn’t a quick fix. We appreciate little progress as we work towards a larger goal of wellness. When it comes to validation of chronic Lyme disease, I similarly appreciate the progress that is being made, knowing there is still distance to be covered. I believe we Lyme warriors have reason to hope.
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir, One Tick Stopped the Clock, is forthcoming from Legacy Book Press in September 2024. Ten percent of proceeds from the book will go to Global Lyme Alliance. Contact her via email below.