As a kid, I was constantly hearing about people who had recently been diagnosed with Lyme disease — parents, cousins, siblings, pets — and in almost every case, the stories I heard were short.
When I was first diagnosed with Lyme disease at age seven in 1998, everyone assumed my story would be short, too. But at fourteen, I was diagnosed again with Lyme and three other tick-borne diseases: babesiosis, ehrlichiosis, and bartonellosis, and I went on to receive over six years of oral and intravenous antibiotic therapy. I am now twenty-six, and still experience symptoms and complications today.
My case is a controversial one: according to many people I’ve spoken to, along with the CDC, the Infectious Disease Society of America (IDSA), and much of the mainstream medical system, it is still believed that Lyme disease is an easily cured infection. These organizations recommend a maximum of six weeks of antibiotic treatment and claim that after this treatment period, the infection will be cured. Unfortunately, there are thousands of people every year who are infected, treated, and still do not get better.
In 2009, as a senior in high school, I was floored by symptoms of neurological Lyme for the first time. In just a few weeks, I lost my ability to read, struggled to speak, had major lapses in memory, and was in six car accidents. It was clear to everyone that something was seriously wrong.
MY CASE IS A CONTROVERSIAL ONE: ACCORDING TO… THE CDC… AND MUCH OF THE MAINSTREAM MEDICAL SYSTEM, IT IS STILL BELIEVED THAT LYME DISEASE IS AN EASILY CURED INFECTION
I saw a new group of physicians that fall located at a mainstream hospital, and who were considered some of the best doctors in the world. They told me that it was physically impossible that I was suffering from an infection because of my treatment history, and that my symptoms were all in my head. It wasn't until I was treated again for Lyme and Babesia, that my symptoms started to subside.
That experience changed me. I learned not to trust my own perception of health and pain. I learned that it was better to stay quiet than to ask for help.
So, I stopped talking about Lyme disease. People always said it would be healthy for me to reflect on my experience—open discussion, they said, would help me better understand what I was going through. But, talking about illness always made me feel like I wanted to run away. Support groups, therapists, and even meditation, all seemed like dangerous traps that would force me to share a story that I didn’t want to tell. So for a long time, I didn’t tell it.
You’d be surprised how easy it was for me to keep a secret that big, as I quickly learned how to give away just enough information to prevent people from asking questions. During high school, when I came late to school after receiving intravenous antibiotic therapy each morning, I told my peers I needed daily medication without telling them what it was for. They never asked a question about it again. Small details were enough to keep people at bay. I made my illness invisible, and I could do so because no one was looking for it.
Things changed since then. My first book, Suffering the Silence: Chronic Lyme Disease in an Age of Denial, tells the story I never thought I’d be willing to tell: the story of my ongoing, sixteen-year battle with tick-borne illness, and the stories of the struggle for recognition and treatment from patients around the world. As I started speaking to other people about their journeys, I found such strength in them. As people started to their illness stories with me, they encouraged me to break my silence and share my own.
SMALL DETAILS WERE ENOUGH TO KEEP PEOPLE AT BAY. I MADE MY ILLNESS INVISIBLE, AND I COULD DO SO BECAUSE NO ONE WAS LOOKING FOR IT.
Something unexpected happened once I started talking and writing about chronic Lyme disease. My fears about the way people would react started to fade. My own self-doubt and desire to hide disappeared. Once I started owning the truth of my experience with this disease, I found empathy in people and had conversations that I never expected to experience. Hearing others share their experiences with illness helped me to better understand my own.
I’ve learned a lot since I started talking about illness, but one thing stands out: I’ve learned the power of discussion and openness. Every time I tell my story, or hear others tell theirs, I’m encouraged to ask more questions. There is always more than we let on. Most importantly, I’m learning that when we talk to each other, we can help heal each other. I see and feel it happen every day. There’s power in our voices.
This fall, alongside my friends Erica Lupinacci and Amanda Crommett, I founded Suffering the Silence, as a nonprofit organization. Our mission is to leverage the power of art, media, and storytelling to raise awareness around the life experience of people living with chronic illnesses. Through stories, we hope to transform medical and social perceptions of those living with these invisible illnesses. It has been an unbelievable gift to travel and meet so many brave chronic illness warriors throughout this journey. It is a journey I never expected to be on, and I cannot wait to continue it.
I’M LEARNING THAT WHEN WE TALK TO EACH OTHER, WE CAN HELP HEAL EACH OTHER. I SEE AND FEEL IT HAPPEN EVERY DAY. THERE’S POWER IN OUR VOICES.
We still have a lot to learn about chronic Lyme disease and chronic disease in general. Better diagnostic tests need to be developed, government treatment guidelines need revision, and patients need more support. But perhaps, the first thing we need to do to see real progress is speak out and own our illness stories—even the chapters that are harder to tell.