Hey, I’m John. I’m 25 and live in NYC.
For a while I didn’t want to talk about my illness. With anyone, really. I kept it a secret from acquaintances and downplayed its severity to close friends. I learned that mentioning Lyme disease to people just confused them or made them uncomfortable. It required long explanations in awkward environments.
Really, though, it made me uncomfortable. I didn’t want to be defined by a disease. I didn’t want people to doubt me, to think of me as the “Lyme disease guy”, the bird with the broken wing. So I arranged my life in such a way that I could give off the appearance of good health. And it worked well for a while.
But recently I’ve gotten over that. I’ve become pretty public about my experience. You see, hundreds of thousands of people are getting sick with Lyme disease each year (300,00 estimated by the CDC), and many of them (up to twenty percent) remain ill after the recommended treatment. If sharing my story means saving just one person from a day of suffering, I think it’s worth any unpleasantness I might feel.
My story, like the stories of many Lyme disease patients, is a long, complicated one, but I’ll try my best to put it here succinctly. I was 13-years-old when I first received a CDC positive test for Lyme disease, but I had been suffering with a wide-variety of troubling health issues since I was 9—neurological problems, chronic ear and sinus infections, degenerative arthritis in my neck, tinnitus, recurrent fevers of 104 degrees, crushing fatigue, night sweats, etc. Over four years, I was sent to different specialists, misdiagnosed with other sicknesses, and finally told to simply get over my symptoms. My family had heard about Lyme disease, even knew people who had suffered from it, but really didn’t know much about it. It wasn’t until half of my face went paralyzed that I was tested for Lyme. This classic, visible expression of Lyme disease and my positive blood tests are blessings that many patients don’t get. Like most people, my family assumed when I tested positive for Lyme disease that I’d just take antibiotics for a couple weeks and rid myself of Lyme, forever. We found out, as many others do, that treating Lyme isn’t always that straightforward.
After a successful initial treatment with three weeks of antibiotics, I experienced only a few mild lingering health problems in high school, until old symptoms returned, gradually at first, when I was 21-years-old. After about a year of trying to dismiss and push through increasingly alarming health issues, I considered whether I might be having another bout with Lyme disease. I sought the opinion of an infectious disease specialist in Connecticut. He really didn’t think so. With new and old positive blood tests in his hands, he dismissed the possibility of a new or recurrent case of Lyme disease. He told me there was nothing to the Lyme disease hysteria, and left me with a stern warning about the Chronic Lyme disease crowd, a rabble-rousing, certifiably insane group, he told me, who, armed with lime green signs and a megaphones, surrounded the offices of medical policymakers to demand long-term IV antibiotics. “You don’t want to become one of those Lyme loonies,” he said, “You might find Lyme whacko doctors who will treat you. Stay away from them, too.”
I smiled, nodded, and left his office, genuinely relieved that I didn’t have Lyme disease.
Over the next few months, I sought answers from a neurologist, chiropractors, and an ophthalmologist, all to no avail, as my symptoms got worse. Finally, with a constellation of severe symptoms, I was connected with a doctor who diagnosed me with late-stage Lyme disease. After several months of treatment, I felt much better, and while today I still deal with persisting symptoms that stem from Lyme disease, I feel pretty healthy. I can manage my symptoms. I don’t know what my life would look like if I never received treatment.
I have been incredibly fortunate.
My experience points out the many shortcomings in the medical community’s understanding of Lyme and other TBDs. Even with a CDC positive blood test, classic symptoms, and exposure to recognized endemic areas, doctors still missed my case and it took far too long for me to get treatment. I was a total layup, a slam dunk, so what would happen to someone without the positive blood test, or someone who got sick in a state where Lyme and other TBDs aren’t even part of the differential diagnosis? The unreliable diagnostic tests, the lack of awareness and physician knowledge, rigid guidelines that are so lacking in nuance, and the stigma that’s been attached to Lyme sufferers have created an environment where a meaningful number of patients fall through the cracks, and live lives of silent suffering.
After I regained my health, got over the stigma attached to Lyme disease, and graduated from college, I thought about ways that I could get involved with Lyme advocacy. I met with support groups and spoke with members of my family (all of whom have suffered from Lyme, with the exception of my brother) about it. I recognized this might be the one time in my life I could commit myself to doing something large, ambitious, and idealistic for this cause.
And so last year I partnered with the Tick-Borne Disease Alliance (TBDA), a national Lyme disease advocacy organization, to bike across the country in an effort to raise awareness and funding for Lyme and its related tick-borne diseases. Above all else, though, the ride was about creating community and honest dialogue. It was about giving Lyme disease patients a platform to share their stories, and giving them a big hug afterwards. I met with hundreds of patients and several physicians, interviewed researchers, and shared their stories through a social media campaign. The campaign was called Bite Back for a Cure. It was the single most fulfilling and real experience of my life.
Pretty much every thing I saw during my trip highlighted the need for more research. Ultimately, I think good science will do all of the speaking for the patient population, but in truth, that kind of good definitive science probably is years away.
I used to be scared that by becoming public about Lyme disease it would define me. I now realize that the disease itself is still being defined. That definition will change based on patient experience; if we don’t talk about it, it won’t change, and more people will continue to suffer.
Right now, our best instruments of change are our personal stories. Let’s use them to change the way people think, talk, and act about Lyme disease
Allie is a magnet for stories and the desire to connect— a rare quality, especially in the world of Lyme disease. I look forward to reading Suffering the Silence and hope her book inspires others to become more open about their experiences with Lyme disease.