New memoir shines light on Lyme disease and chronic illness

After decades of suffering from debilitating symptoms and declining health, local author Jana Steck was diagnosed with Lyme disease.

The June 23, 2017, diagnosis was the answer she had been searching for since early childhood. Yet, it would be an uphill battle against the painful chronic symptoms of the disease that had worsened over time.

In her new memoir “The Battle Within: My Lyme Story,” Steck lays bare a life burdened with chronic illness and shines a light on Lyme disease. Now that she has been declared in remission, Steck said it’s important to her to raise awareness about the elusive disease.

Journal entries she kept while she was homebound during treatment serve as the heart of the memoir. Journaling began as a way to keep track of her symptoms for doctors but it quickly became a form of catharsis. Steck said she was on antibiotics for about two and a half years along with multiple herbal tinctures and a Paleo-friendly diet.

“I began writing out sort of mini-stories, or, what would you call it, just venting about these scary moments that happened and it was pretty early on in my journey that I decided I wanted to write a book,” Steck said.

HAVING PERSEVERED through chronic fatigue and fibromyalgia since college, Steck had come to accept that this was how life would be for her.

“I feel like I’ve been sick since childhood. As long as I can remember, I’ve been exhausted. I was tested multiple times for vitamin deficiencies, iron deficiencies … and nothing ever came back,” she said.

She thought the fibromyalgia diagnosis would be a turning point. At the time, she was a dance major at the University of Montana. Starting ballet lessons around 3 years old, Steck dreamed of being a professional dancer in New York.

“It was like, I finally have an answer. There’s a reason why I feel like I can’t get out of bed and my bones just ache and my muscles ache,” she said.

Left untreated, her health continued to decline into her 30s when a traumatic series of health scares led her to the Bridge Medical Center in Whitefish where a naturopathic doctor diagnosed her multitude of symptoms as Lyme disease.

“I was fortunate that Dr. [Julie] Barter had just moved here and had battled Lyme disease herself and therefore is very learned in how to treat Lyme disease and co-infections. She pretty much immediately after listening to my very long list of symptoms was like, I think you have Lyme disease and so I tested for it,” Steck said, later noting, “Lyme disease is known as the great imitator because it does imitate so many other illnesses.”

IN HER memoir, Steck recounts periods of exhaustion, pain, fear and isolation to periods of celebration, resilience, hope and renewal. The memoir culminates with Steck undergoing psychotherapy. After she was declared in remission, Steck said she experienced panic attacks and flashbacks.

“Right as I was trying to get my life back together, I found myself unable to leave the house again and was subsequently diagnosed with complex PTSD, so I began seeing a therapist,” Steck said, which was life-changing,

“... mental health therapy should be part of everybody’s Lyme disease treatment,” to help people process what can be a multitude of symptoms happening at once, she said.

Therapy has also helped Steck rejoin society after being ill for so long.

“It’s hard to retrain your brain not to immediately go into fight or flight,” Steck said, if, for example, a familiar symptom occurs.

“So learning to sit in my body and talk to my body and go, ‘OK, that pain you’re having, or your muscles are sore because you went in the garden yesterday and you spent two hours picking weeds that’s why your hands are sore. It’s not your fibromyalgia coming back.”

Steck said she wrote the memoir with the hope that others with Lyme disease know they are not alone.

“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,” Steck said.

She also began an online blog to serve as a place of encouragement and connectedness. Steck said she came to view herself as, “a warrior, suiting up every day to battle the bacteria that had invaded nearly every organ in her body,” and wanted to continue encouraging others “to see themselves as the warriors.”

“The Battle Within: My Lyme Story,” is available at Beargrass Gift and Drug in Columbia Falls, The Bookshelf in Kalispell, and online sellers including through the website where she blogs at www.unitedbylyme.com.

Reporter Hilary Matheson may be reached at 758-4431 or hmatheson@dailyinterlake.com.