In the Introduction of my memoir One Tick Stopped the Clock, I write about the frustration many Lyme patients felt when long-haul COVID started getting a lot of press attention. “We have similar symptoms,” these patients said. “Why is everyone talking about COVID long-haulers when we’ve been suffering for years?”
As a long-hauler of both COVID-19 and tick-borne diseases, I understood this frustration. Despite an estimated 476,000 new cases in the U.S. annually—more than HIV and breast cancer combined—Lyme disease still sometimes seems invisible. It doesn’t get the same attention and funding as other serious or chronic conditions, and many patients feel unseen, unheard, or dismissed by doctors, family, and friends.
That said, the needle is shifting in ways some people might not yet be aware of. I noted in my Introduction, “I think it’s precisely the attention on long-haul COVID that may finally shed light on—and bring credibility to—other persistent, complex illnesses.” Indeed, understanding and research of Lyme disease is getting better. Let’s walk through why Lyme and other tick-borne illnesses can feel invisible, and how visibility is improving.
Invisible illnesses cause interior symptoms that other people can’t necessarily see. Someone in a wheelchair, in a cast, or on crutches has a visible aid that tells others something is physically wrong, often eliciting sympathy. Someone with an invisible illness, on the other hand, might present as “fine” to the outside world when inside they’re suffering from debilitating fatigue, brain fog, cardiac symptoms, joint pain, sleep disturbances, burning extremities, headaches, and more. Their faces may sometimes look wan, as one appears when they have the flu, but on good days—or during good hours—they may look relatively “normal”. Because chronic illness patients spend so much time in bed, when they do go out into the world, they may try to get “done up”—I would put on makeup, change from sweats to a nice outfit, and do my hair—which made me feel better inside but didn’t help people to understand my condition based on what they saw on the outside. Thus, long-haul patients are often told, “But you don’t look sick.”
For Lyme patients, invisibility goes beyond not having physical symptoms recognized. Our illness itself, especially in its chronic form, is sometimes brushed off as non-existent. During early disease, Lyme disease tests, which only look for antibodies against the Lyme bacteria Borrelia burgdorferi rather than for the bacteria itself, can fail to detect infection, so many cases are mis- or undiagnosed. Delayed diagnosis only increases suffering as untreated bacteria spread to multiple parts of the body including the heart, joints, and central nervous system, causing serious symptoms that can get written off as stress, depression, or anxiety. Because some cases are luckily caught and treated during stage 1, long-haul sufferers can hear comments such as, “Oh, my aunt had Lyme disease. She got better in two weeks. There must be something else wrong with you.”
Unfortunately, Lyme patients sometimes get this write-off from medical practitioners, too. Despite the fact that Lyme is a clinical diagnosis based on symptoms and risk factors that can be corroborated but not solely determined by a blood test, some practitioners still go only by the tests, missing a lot of cases. Lyme disease is a complex illness that has been dubbed “the great imitator” because its symptoms can mirror those of other conditions from the flu to rheumatoid arthritis. Rather than negligence, it’s complexity, uncertainty, and systemic issues like short appointments mandated by insurance that often lead practitioners to miss Lyme or other tick-borne diseases.
I’ve found that when I take the time to explain updated diagnostic criteria or point out the dangers of waiting and seeing with Lyme disease when advocating on behalf of a friend with Lyme symptoms and risk factors, practitioners have been willing to listen and to prescribe antibiotics. Still, it’s frustrating to have to fight so hard just for a Lyme patient—especially one with obvious systems like an Erythema Migrans (EM) rash—to be seen.
In addition to some practitioners being more open-minded, others are becoming more informed about Lyme disease on their own, whether due to personal experience or patients who are showing them the ropes (my own PCP now thanks for me teaching her about the lived experience of Lyme disease). Moreover, there have been significant improvements in the recognition of long-haul Lyme disease, as with other long-haul illnesses. The CDC website now states, “The state of the science related to persistent symptoms associated to Lyme disease is limited, emerging, and unsettled. Additional research is needed to better understand how to treat, manage, and support people with persistent symptoms of Lyme disease.” While the CDC has yet to use the word “chronic”, the fact that it now recognizes persistent symptoms—and the suffering caused by them—is a significant shift. Similarly, Harvard Health Publishing, a division of Harvard Medical School, has created the Lyme Wellness Initiative website, which acknowledges persistent symptoms, offers sympathy and management tools for them, and recognizes that they may be caused by a number of different factors including lingering infection.
The causes of persistent symptoms as well as other important gaps in research—such as diagnostics and treatment—are being addressed by The Johns Hopkins Lyme Disease Research Center and the Columbia University Irving Medical Center Lyme and Tick-Borne Disease Research Center. Global Lyme Alliance is funding studies such as one examining how genetic differences among patients might drive immune responses that impact recovery and symptom persistence after Lyme disease. Another study is investigating whether there’s a relationship between Lyme disease and postural orthostatic tachycardia syndrome (POTS), with the goal of better understanding persistent symptoms and improving diagnostic precision. A recent U.S. Department of Health and Human Services (HHS) roundtable on Lyme disease brought patients, providers, and researchers together and led to a renewal of the LymeX Innovation Accelerator with the Steven & Alexander Cohen Foundation and a commitment to “…strengthen prevention, diagnosis, and long-term care for people affected by Lyme disease and other infection-associated chronic conditions.”i
With increased research and public awareness efforts, Lyme disease is becoming more visible, though we still have a way to go. From doctors’ offices to roundtables to private conversations, we can see why listening to patients matters and why research is the path forward. I truly believe the needle has started to shift and can continue to with effort from us all.