I was first diagnosed with Lyme disease when I was seven years old. I had all the classic signs of infection — a tick bite, a fever and the infamous Bull’s-eye rash, which appeared like a red target on my thigh. I lived in Irvington, N.Y. at the time, where awareness of the disease, and its infection through tick bites, is high.
So that summer in 1998, I quickly tested positive for Lyme, and joined theestimated 300,000 other people who are diagnosed with Lyme disease every year in the U.S. I took the traditional three weeks of the antibiotic Doxycycline, and everyone assumed I was cured.
Unfortunately, my Lyme story was far from over.
As I went through puberty, I started to experience extreme fatigue and lasting muscle and joint pain. My persistent symptoms prompted new blood work, and in high school I was diagnosed with Lyme again.
My tests also revealed three other infections that had yet to be treated: Babesia, Bartonella, and Erichilia, diseases that can all be transmitted in the bite of one tick. Doctors were unsure if this new diagnosis was related to my original bite. After all, I was outside all the time, living in one of the most endemic areas of the world, and it was entirely possible I had been infected again.
And so I spent the next three years on a constant stream of IV antibiotic therapy, an effort to keep my worsening symptoms at bay.
Spending my adolescence in IV clinics felt as emotionally demanding as it was physically. When the treatment became too difficult, I worked instead to fight my disease with diet changes and high-dose vitamin therapies. Though I didn’t know its name at the time, the Autoimmune Paleo Diet was personally one of the most successful treatment experiences I’ve had to date. I was healthy for almost a year.
But when I turned 17, I experienced my first neurological symptoms of Lyme disease. In the fall of my senior year, I struggled to read, speak, drive, and even to hold my fork at dinnertime. Throughout most of my life, living with Lyme had meant dealing with fatigue, joint and muscle pain. Now years later, difficulty speaking and feeling lost in my school hallways became the new normal.
I thought I had learned what it was like to live with Lyme, but now this felt like a whole new disease.
Why I’m Opening Up About Life With Lyme
It’s hard to describe daily life with Lyme disease, because it’s always changing. When I meet other patients who suffer from chronic Lyme disease and other tick-borne illnesses, I’m always surprised by how different their experiences are from my own. Diagnosis stories, treatment stories, and even symptoms can vary greatly between patient narratives.
As a culture, we tend to think of illness as something that’s easily defined by medical textbooks, or solved by a single prescription. Our expectation is for patients to get sick, and then get better. But chronic illness is more complicated than that. And as a result, when we talk about Lyme, patient experiences are often dismissed, simplified, or even ignored.
And so I’ve recently started opening up and telling my story. It hasn’t been easy, but finding my voice has been an incredibly powerful tool in the healing process. Every time I share my experience, I’m encouraged to accept the peaks and valleys of this disease, and not to judge differences in individual experiences. I know how difficult the inconsistency of chronic illness can be, but the simple act of owning that inconstancy is helping me to move forward and heal.
For almost two full years now, I’ve been very lucky to feel healthy, thanks to a combination of high-dose vitamin therapy and managing flares of symptoms with the Autoimmune Paleo Diet. I’m 24 years old now, and though I’m scared that one day I’ll fall back into the pain and fog of Lyme, I’m optimistic that I’ve left the worst of Lyme disease behind me.
There is a lot that still needs to be done to reform the patient experience and cultural perception of tick-borne disease. Better diagnostic tests need to be developed, stronger data needs to be collected, and patients need more support. But perhaps the first thing we need to do in order to see real progress is to speak out about the complexity of our experiences and push for a more flexible understanding about what it means to live with Lyme disease.
Our stories might not fit into the narrow definition of Lyme seen in textbooks, but that doesn’t mean they don’t need to be shared.