by Jennifer Crystal
When I was bedridden with Lyme disease, two tick-borne co-infections babesia and ehrlichia, and chronic Epstein-Barr virus, I often felt terribly alone. Friends and family did their best to try to understand what I was going through, and many offered compassion even when they couldn’t understand the nuances of the illnesses. But sometimes I got well-meaning questions like, “When you do you plan to get better?” or “How much longer will you be ill?”, or “Don’t you want to work and get out on your own?”
Unfortunately, these are questions patients of tick-borne illness hear all too often. The answers are: Of course one wants to get better. Of course one wants to work again. Patients wish it could happen tomorrow. But sheer will won’t eradicate the physical infections ravaging their bodies, and they need to take medication—and time—to get well enough to live their lives.
In addition to hurtful questions, patients hear doubts about the validity of their illnesses. From doctors who aren’t Lyme literate to neighbors, family members, acquaintances, and co-workers, patients are told everything from, “Well, your lab work looks fine, so there is nothing wrong with you” to “You are likely just anxious/depressed/run down.” Invalidating a patient’s suffering, writing off their physical symptoms as psychosomatic, and not offering the real support and care they so desperately need can indeed leave patients feeling anxious, depressed, depleted—and very much alone.
Chronic illness is extremely isolating. Too sick to socialize, work, or even leave the house, patients miss out on so much. My friends came to visit as often as they could and stayed connected with me via phone and email. But the stretches of time in between those visits seemed endless. The clock ticked as I waited to get well and eventually rejoin the land of the living. I watched from the sidelines as friends hit major career and family milestones. I wondered if I would ever do the same. I was stuck on pause, but the rest of the world—or at least the rest of my world—was still in motion. I was impatient to catch up.
Eventually, when I was well enough to participate, I found some solidarity in a local Lyme support group. It was reassuring to meet others whose lives were also on pause, who suffered the same symptoms as I did, and who knew what it was like to be misunderstood. However, I wished there wasn’t such a disconnect between those who “got it” and those who did not. I wished there was not such a divide between,“the kingdom of the well and the kingdom of the sick,” as Susan Sontag so aptly called it in Illness at Metaphor.
My recovery from COVID-19 has been totally different. I was quarantined with COVID-19 for 41 days. I won’t pretend it was easy to be alone in my studio apartment all that time. It was lonely. It was hard to keep up with household chores. It was frustrating being sick again. But it was much easier than the years I’d spent convalescing from tick-borne illnesses and Epstein-Barr virus. No one questioned my illness, even when a faulty nasal swab didn’t at first confirm my doctor’s clinical diagnosis (which was later supported by a positive antibody test). No one told me it was all in my head. No one told me I was just anxious. No one questioned whether my fever was real, whether I’d really lost my sense of smell, whether my persistent cough was the result of psychological stress. My symptoms were validated, and I didn’t have to seek out a support group to find others who were experiencing them.
No one has pushed me to get well faster. I had relapsing low-grade fever until mid-May, and I still have a lingering cough. I want that cough to be fully gone, and every else in my life does, too. But knowing that there are thousands of other “long-hauler” COVID-19 patients—many of whom are not immunocompromised—the doctors and I feel reassured that my experience is normal. Instead of asking when I plan to work more, people have questioned how I’ve been able to keep working through COVID-19, wondering whether I’m taking enough time to rest (I am. I work from home, on my own schedule, which has allowed for proper convalescence).
This time, I don’t have FOMO (fear of missing out), because there’s nothing to miss; everyone, sick or healthy, has been on hold right along with me. Though I’ve been physically alone, I’ve been much more connected with people during this recovery, because everyone’s scheduling online hangouts. Sick or well, we all commiserate over the annoyances of isolation. There is solidarity in our separation.
This solidarity is what it should be like for patients with any long-term illness, be it late-stage Lyme or cancer. No one’s illness, no one’s doctor, no one’s experience, should be questioned. No one should be pushed to do what their body cannot do. No one should feel isolated, invalidated, or dismissed simply because they are sick.
At the conclusion of his article “COVID-19 Can Last for Several Months”, The Atlantic journalist Ed Yong muses that perhaps COVID-19 will galvanize the chronically ill: “Perhaps, collectively,” he says, “they can push for a better understanding of chronic diseases, and an acceptance of truths that the existing disability community have long known. That health and sickness are not binary. That medicine is as much about listening to patients’ subjective experiences as it is about analyzing their organs. That being a survivor is something you must also survive.”
Perhaps the solidarity I felt while recovering from COVID-19 will become the new normal for Lyme patients, too.
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.