By Jana Steck

I am a Lyme warrior, five years into remission, with a calling to help others still in the midst of their battle to feel a little less scared and alone.

Yes, I lost hair.

I, too, went to bed fearing I wouldn’t wake up tomorrow.

And, yes, I also felt unseen and unheard.

Yes, I had weird rashes.

I, too, couldn’t sleep through the night.

Yes, I was depressed.

And yes, I feared my boyfriend was going to leave me.

You are not alone.

A terrifying and bleak disease

I wrote in my journal, on August 9, 2017, the first words of what would become my memoir, The Battle Within: My Lyme Story. I started my treatment for Lyme disease on July 20, 2017. In other words, within three weeks of starting treatment, I knew I had to let others know that they weren’t alone in their suffering. I also knew I wanted the world to understand how truly terrifying and bleak this disease is.

Unfortunately, my story is similar to so many of yours. I’ll never know for certain, but I believe I went undiagnosed and/or misdiagnosed for twenty plus years. It began when I was a young child struggling with fatigue.

Over the years, many possible diagnoses were floated in my direction. Chronic fatigue syndrome, fibromyalgia, multiple sclerosis, a hole in my heart. The (mis)diagnosis that stuck was fibromyalgia. I lived with this incurable chronic illness diagnosis for twenty years.

By the time I was diagnosed with Lyme disease, my list of symptoms was as long as my arm. I had symptoms that I didn’t even know were symptoms.

Over the course of those twenty years I developed a tremor, searing headaches, memory loss, difficulty with word recall, bowel issues, excruciating menstrual cycles and what I came to learn was Lyme rage. Just to name a few.

Once I started treatment, the uncertainty and isolation wrapped itself around me and held on tight for two-and-a-half years.

Nothing prepares you

When I started treatment, the fear grew exponentially. I woke up scared, I went to bed scared and all the moments in between were full of ruminating while holding panic at bay. A relentless slog of fearing my body and wondering if this agony would ever end. My doctor had warned me that I would get worse before I got better, but nothing can truly prepare you for what it’s like to treat Lyme disease.

During my battle, I was surrounded by a sea of unknowns, drifting in a boat of despondence. Questions loomed and swirled like the torrent of a hurricane, the winds whisking me away to a place of torment. Pain, fear and suffering bounced off my boat like a thousand tiny rain drops, saturating every waking moment. Uncertainty swallowed me up. I wondered constantly if anyone else was experiencing what I was experiencing.

What makes Lyme disease so scary

Five years into remission, I’ve had some time to reflect upon what makes treating Lyme disease so scary. Aside from the obvious answer, which is that you feel like you might die every day, I realized it’s the uncertainty. The not knowing. The silence that envelops this disease. There’s a reason they call it the quiet epidemic.

“As I navigated treating Lyme disease, I felt so alone. With the appearance of each new crazy, inexplicable symptom I was terrified. I needed someone to talk to, someone who understood what I was going through. I needed a reference point, some assurance that I wasn’t dying a slow and horrible death. I needed to know if others had experienced similar issues. That someone, that reference point, that shared experience, was hard to find.

“In Gladiator, Russell Crowe cites the immortal words of Marcus Aurelius, reminding us that ‘what you do in life echoes in eternity’. This inspiring call to arms speaks to why I’m writing this memoir. It’s the hope that if I could help even one person get through this horrendous disease with knowledge and a modicum of comfort, if I could help one person feel a little less scared and alone…well, that’s a legacy I can be proud of. It may not echo in eternity, but hopefully it will resonate in the souls of others suffering a similar struggle as my own.” 

-Excerpt from The Battle Within: My Lyme Story

Going forward

I will continue sharing my experiences, always with the aim of creating a safe space. This is why I wrote my memoir and why I continue to share my experiences at United by Lyme. I knew I still wanted to hold the hand of as many Lyme patients as I could. I want to wrap you all in a warm blanket and run a hot bath for you.

I also write for the caregivers of Lyme patients so they can better understand what their loved ones are experiencing. I want to create a safe space where you feel seen and heard, where you feel connection and community. You Are Not Alone in this battle, dear Lymies. Keep fighting!

Jana Steck lives in Montana. Click here to learn more about her book The Battle Within: My Lyme Story.