I don’t talk that often about having Lyme. It’s such a part of who I am that I’m not sure where I stop and the Lyme begins. Lyme is tricky that way—she gets under your skin and invades your systems. She takes over control and makes you say and do and feel things that aren’t you, but become you.
I was a senior in high school when I was first diagnosed with chronic Lyme Disease. And I had been struggling with strange symptoms for at least a decade before that.
It started in third grade when I went to a weeklong Girl Scout Camp. When I came home, I took off the watch I had been wearing all week only to find that a tick had made a home under my watch and was embedded into my wrist.
It was that year that, according to my mom, my personality changed. I went from being a happy-go-lucky kid to being moody and irritable. I complained endlessly about headaches. I started seeing all sorts of doctors. I got a CAT scan. The doctors couldn’t find anything so I kept on growing up—looking normal from the outside, while being terrorized from the inside.
When I was finally diagnosed with chronic Lyme, most mainstream doctors and the wider medical community didn’t even recognize the disease. I was 18 when I was thrust into the center of a debate that I didn’t choose to be in. Was I making up all my symptoms? What is real?
And that’s the rub with chronic illness: We begin to doubt our own bodies and our own experience. We think that maybe we are crazy or making this all up or overly sensitive or too emotional.
Back in 2005, when the Internet was still novel, I thought about starting a blog about having Lyme disease. I told my mom about this great new idea! I could try out healing methods and share my story. She didn’t respond with enthusiasm—maybe she didn’t want me to become a Lyme poster child. Whatever the case, I dismissed my inspired idea.
In retrospect, I’m sorry I didn’t start that blog. By sharing my story, I could have validated and supported others. I could have helped destigmatize Lyme and chronic illness. Instead, I decided to bury my truth. However, I’ve learned that when we speak the truth from our hearts and are heard by others who are listening from their hearts, we experience healing.
As part of my healing process, I’ve had to learn how to retrain my mind and change the narratives I repeat to myself. “We tell ourselves stories in order to live,” writes Joan Didion, my favorite author. I used the power of my mind to heal. I told myself that every time someone touched my head, they were healing me. So every time I got a massage, a haircut, or a sweet stroke from a lover, I was being healed (this was in addition to a whole regimen of medicines). I also found the most profound healing in reconnecting with nature.
I would not be the healer I am today if I had not been entangled with Lyme (I was bitten by another tick last year!). And yet, I’ve decided that my saga with Lyme might always be a part of me, but it’s not going to be the story of my life. Know that your truth is real and your story is valid. Your profound source of strength is within you. I wish you blessings on your journey.
To learn more about Julia’s journey, follow @juliaplevin and @forestbathingclub.