Categories: Guest Post Health & Healing Psychology & Personal Growth
I never thought I would write about Lyme disease. I didn’t even like to talk about it. 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, even meditation, all seemed like dangerous traps that would force me to share a story that I didn’t want to tell.
And 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. I learned quickly 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.
This was made easier by my age and appearance. Through most of my experience with illness, I haven’t had visible signals that would help people realize that I was unwell. I hadn’t lost my hair. I wasn’t being pushed around in a wheelchair. I looked just like the other kids at my school. And because most people were only slightly aware of my condition, it was easier for me to ignore it in myself. Even as treatments failed, as symptoms got worse and at times even dangerous, I pretended things were okay. When my joints swelled to the point that I struggled to walk, or even pick up a pencil, I hid my pain. I made my illness invisible. I could do so because no one was looking for it.
My first book, Suffering the Silence: Chronic Lyme Disease in an Age of Denial, came out last September. It 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 patients around the world and their struggles for recognition and treatment. I found such strength in those patients. As they shared their experiences with disease, they encouraged me to break my silence and share my own. 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 conversations that I never expected to find. Hearing other people 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 to tell than we let on. And 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. We still have a lot to learn about chronic Lyme disease, and about 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 in order to see real progress is speak out and own our illness stories—even the chapters that are harder to tell.