To the Tick That Bit Me, Thank You

Lyme Disease Birthed a More Loving Relationship With Myself

Daniel Lyons
Sep 17, 2019 · 7 min read
Photo by Rosie Kerr on Unsplash

Allow me to set the scene: it’s July of 2018. I wake up one morning and my reality starkly changed. It was the Fourth of July and my friends invited me to the beach. When I woke up that morning, something frightening happened: I couldn’t get out of bed. I nearly fainted en route to the bathroom and an ache in my bones sank in so deep I was certain I was dying. I laid back down and began to alternate between dripping sweat and shivering chills. My body was on fire.

Weeks earlier, I was hiking in the San Bernadino mountains outside of Los Angeles. I hiked ten miles in the heat of summer with ease, splashing in the river, sunbathing with my friends. Now I was lucky if I could make it to the other side of the room without toppling over. I crawled on hands and knees and collapsed on the bathroom floor.

I spent the next several months in and out of doctors offices, the Emergency Room, and Urgent Care. I was diagnosed with strep throat, Mononucleosis, and stress. My doctor told me to take it easy and I’d get better. I told him about my tick exposure before getting sick (my dog and I were crawling in ticks in Malibu in the Spring), but he shrugged it off and told me his intuition was that this wasn’t Lyme Disease. He said tick illness was rare in Southern California; never mind that ticks have tested positive for Lyme throughout California. My intuition screamed, as did my body, but I believed him. I really wanted to believe my doctor and so I did. I thought about getting a second opinion from a Lyme Disease specialist in Los Angeles, but scared of missing more time away from work, I cancelled it and told myself I was exaggerating symptoms.

Months went by and my symptoms waxed and waned. I got better and then I got worse. Little did I know, this is quite common with Lyme Disease. For the most part, I was functional. I went skiing with my friends in the winter and suffered from occasional fatigue and migraine headaches. I wanted to believe it was the ‘kissing disease’ that I contracted from kissing a relative stranger on the dance floor of a discoteca in Colombia last year. I found that version of my mystery illness story amusing than a tick disease invading my body, mind, and soul.

Then came Spring of 2019. I woke up one morning with my then boyfriend. Something wasn’t right in my body and I ignored it. I didn’t want to ruin the morning. I was always so scared of things being less than perfect. I felt faint and dizzy but I feared telling him.

I pushed past the feeling and pretended I was just fine, when I was not (a favorite past time of mine). Suddenly, WHAM. The room went dark, my vision blurred. Suddenly I was in a heap as my boyfriend leapt across the room. As I fainted on the floor, I hit my head. I gashed it open and needed stitches in my forehead. With a low grade concussion, I climbed back into bed that day and it hit me: something was really wrong this time. Later I would learn dizziness and fainting spells can be a part of Lyme Disease.

I didn’t bounce back after that incident. The fatigue came rushing back and I was met with a host of neurological symptoms that are common to Lyme Disease if one doesn’t get treatment immediately after infection by a tick and the disease progresses throughout the body. Suddenly, I started slurring my speech, forgetting words, getting lost while driving, and having emotional breakdowns as I tried to keep doing my job in corporate social media. Once more, I couldn’t get out of bed. People asked me simple questions I couldn’t answer.

I waved my white flag: “I surrender. I can’t live like this.”

I took a medical leave of absence from my corporate job in social media. Little did I know: I would never go back. I eventually would leave my corporate gig in the interest of my health and well-being.

That moment was a critical turning point in my illness. Always on the go, I suffered from what I called ‘Superwoman Syndrome.’ I have a history of doing too much: running too much, working too much, achieving too much, being too hard on myself. Now, I was faced with the woman under the cape, the one I’d long battled with: me.

These last few months my brain was turned inside out and my world, upside down. But Lyme Disease, as crazy as this sounds — has been a gift. Going outside was the way I knew to cope with the world and it also got me sick. I’ve been forced to go to a new place, an unfamiliar one: inside of me. I’ve been forced to sit with myself, to take care of myself, to love myself, to be kind to myself. Above all, to just be with myself on the days when the bacteria inside of me try and take me hostage.

Lyme Disease is an illness that will push the strongest and toughest people to the brink of insanity. I nearly hallucinated from a Lyme Disease co-infection called Babesiosis; it’s a malarial like tick infection with a strange array of symptoms. While I’m happy to share my mental health has returned today, there were moments this Spring I thought I was losing my mind. And I was: Lyme can produce a host of psychiatric symptoms if left untreated.

While awareness is on the rise, we have a long ways to go. We often aren’t believed by the medical system and many of us face a long road of misdiagnosis and a lack of help before we get into the right hands to diagnose Lyme. It took me a year to get a diagnosis (Lyme Disease testing is notoriously elusive) and I’d consider myself lucky. I have friends that waited decades for a diagnosis. It’s wildly contentious, divisive, and confusing. It’s also a double edged sword: it’s hard to diagnose and the longer we go without treatment, the worse our infections become and the harder it is to treat.

All clichés aside, there is a silver lining. One year in and a few months in, I can say I’m starting to break free from patterns no longer serving me. I’m starting to love myself. I am learning to accept who I am with all of my messiness and imperfections. I’m setting down my need to do it all. I’m learning to say: ‘No.’ I’m letting go more gracefully of those things that no longer serve me.

I’m finally doing things I want to be doing and I quit doing the things I don’t want to be. I’m taking guitar lessons, which don’t tax my body. I’m writing more than I ever have. I take leisurely walks to the Los Angeles river with my beloved dog, Wally. I meditate. I take baths with essential oils. I pray, a lot.

When my loved ones haven’t been able to show up the way I was hoping for during this season, I’ve had to learn to love myself harder. When my romantic relationship fell apart ten days after my Lyme Disease diagnosis, I asked myself: how can I love myself the way I was hoping for him to love me?

When my family stirred old feelings of shame by questioning the sanity of my choices with Lyme Disease, I asked myself: how can I give myself the love and approval I so deeply crave right now? I have tried my best to drown out the critical voices and go inward.

I’ve stopped doing so much and I’ve started to enjoy the company I keep while my friends are off working and hiking and living their lives and I’m resting on the couch or at another medical appointment hooked up to an IV. I’ve learned I really like myself.

Life is slower. Life is simpler. And it’s peaceful. I never would have given myself a life like this without getting a bite from that God-forsaken tick. I’ve started to live the life I always dreamed of with a freelance writing career from home.

I set a hammock up in my yard where I spend hours in a meditative like state, being rocked and held. I have time to watch the hummingbirds buzz about the garden. I stop and yes, smell the roses in my garden. As I’m writing this, there is a chorus of bird song outside of my window and they’re zipping from branch to branch. I moved too fast to notice this before. I am learning to fill myself up from the inside out and not the other way around. Lyme Disease for me has been a physical, emotional, and even spiritual journey.

I did something kind of crazy the other day: I sat in front of my mirror, naked. I held myself. I told myself I was beautiful. I told myself: I love you. You are worthy of love. You are loved beyond your wildest dreams.

Chronic, invisible illness is a life altering journey. It’s real and it’s hard and it’s scary. I am also better for it. To the tick that bit me, thank you. Thank you for helping me hang up my Superwoman cape, for slowing me down, and for allowing me to begin to see my own humanity and love myself from there. It’s been one hell of a year and I am grateful for you.

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Daniel Lyons

Written by

Author, Storyteller, Poet, and Queer Mental Health Advocate. Transgender Badass ~ he/him/él 🌈

The Startup

Get smarter at building your thing. Follow to join The Startup’s +8 million monthly readers & +800K followers.

Daniel Lyons

Written by

Author, Storyteller, Poet, and Queer Mental Health Advocate. Transgender Badass ~ he/him/él 🌈

The Startup

Get smarter at building your thing. Follow to join The Startup’s +8 million monthly readers & +800K followers.

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