Whenever I tell someone that I’m a writer, their natural question is, “what do you write about?” If we get past the perfunctory response of “health content,” the subject turns fairly quickly to Lyme disease, and then the inevitable, “What got you interested in writing about Lyme?”
That’s where I pause.
Given the controversy around the term chronic Lyme, and the fact that I outwardly present so healthily right now, I’m never sure exactly how to answer this question. If I say, “I have chronic Lyme disease,” I might get the typical “but you don’t look sick” response that many patients hear all too often. Or I might get, “does chronic Lyme really exist?” Suddenly a casual conversation can turn to a heated debate or a reveal of too much personal information, too soon. But if I say, “I had a very serious case of Lyme disease,” that’s only a partial truth; the case was indeed quite serious, but it’s not fully cleared. I’m in remission but can still experience flare-ups.
I’d like to explain exactly what chronic Lyme disease is and is not, what it means to live with it.
What is chronic Lyme disease?
Chronic Lyme disease is a broad term used to describe patients who have been sick with Lyme disease for a long time. Some have completed treatment and still have symptoms (this is a small group, who have Post Treatment Lyme Disease or PTLD). Others, like me, went months or years without an accurate diagnosis, have late stage Lyme that has crossed the blood barrier and/or is complicated by co-infections, and are still undergoing treatment. Some, also like me, have gone off that treatment only to restart it when they relapse, all over a long-term period fighting tick-borne illness. My own battle has gone on for 25 years, more than half my life.
What chronic Lyme disease is not
Chronic Lyme is not a self-diagnosis. Lyme disease must be clinically diagnosed by a medical professional. (A clinical diagnosis can be corroborated by blood tests, but because Lyme testing is so faulty, it cannot be solely relied upon to determine if someone does or does not have Lyme). As with all illnesses, some people may think they have chronic Lyme after they put all of their symptoms into an internet search, or read a story like mine and see their own symptoms in it. It’s possible some of those people may yet be undiagnosed with Lyme or other tick-borne illnesses. It’s also possible that they might have other illnesses. Those who actually have chronic Lyme disease have been diagnosed with it by a medical doctor.
What does it mean to live with chronic Lyme disease?
Because no two cases of Lyme disease are alike, every chronic Lyme patient will answer this question differently. And here’s the real crux: the same patient will answer this question differently at various points in their journey. When I was first diagnosed not just with Lyme but also with babesiosis, ehrlichiosis, and chronic active Epstein Barr virus, I was bedridden. I couldn’t work, or walk to the end of the block. Some days I was too exhausted to shower. I wrestled symptoms like brain fog, burning extremities, extreme fatigue, hives, migraines, and muscle and joint pain. At that time, living with chronic Lyme disease meant being acutely ill every day. It meant that tick-borne illness was central to my life, because I was too sick to function beyond it.
Over time, my health improved and my definition of living with chronic Lyme disease changed. At one point, it meant being off of medication entirely, trying to work part time and dive back into all other aspects of living. I jumped in too fast, didn’t pace myself well, and ended up bedridden once more. At that time, I was largely in denial about the chronic part of my illness.
After that relapse, I had to learn to accept tick-borne illness as part of my life, without letting it run my life. This meant pacing myself physically and neurologically, going back on treatment, practicing adjunct therapies, and then starting graduate school. Eventually, I found a rhythm that has allowed me to maintain remission for over a decade. But over those years, living with chronic Lyme has looked different at some points than others. I can exercise more now than I could three years ago. I can take on more work than I previously could. Besides an afternoon nap, I can work and socialize and ski and paddle-board and generally function like my healthy contemporaries. I definitely don’t look sick, nor do I really define myself as such. But I still have chronic Lyme.
In short, Lyme disease is a spectrum, and people with chronic Lyme live at different points on it. Because of the controversy over the term, I’ve learned that it’s sometimes better to describe my situation using other terms like long Lyme, long-haul Lyme, persistent Lyme, or relapsing Lyme. Whatever you call it, chronic Lyme is a debilitating illness that affects individuals differently but causes immense physical, emotional, financial, and sometimes neurological upheaval for most. If someone has been diagnosed with chronic Lyme disease, their illness is real and should be validated, despite what their illness is called, and even if they don’t “look” sick.
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.