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The Joy and Pain of Living with Lyme Disease

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It was October 24, 2013 — probably an average Thursday in the lives of most people. For me, however, it was a life-changing day; it was the day I finally had some answers. After numerous doctors and 10 years of seriously declining health – the last 18 months of which I had spent bedridden – I listened sharply on the phone as my nurse practitioner informed me, “You have Lyme disease. You’ve probably had it most of your life.” Strangely, I was both scared and relieved to hear the Lyme disease diagnosis. I was scared because, well, I knew I would be embarking on one of the greatest challenges of my life, and I was relieved because I was no longer in the dark about what to call the mysterious illness wreaking havoc on my body. 

The list of diagnoses I had collected over the years — from interstitial cystitis and myalgic encephalomyelitis to fibromyalgia, and adrenal fatigue — all suddenly seemed interconnected. I knew that Lyme disease treatment would require patience, persistence, effort, and faith. Nevertheless, I was ready to confront the illness that had sidelined me for years. Thankfully, I had the support of my loving husband and family.

On that fall morning in October, my nurse practitioner laid the groundwork for a treatment protocol for chronic Lyme disease that has slowly helped me to rebuild my life, one tiny step at a time. There are layers of damage to address as a result of going years — maybe even decades — with undiagnosed, systemic infections. I just passed the six-year treatment mark. I am not cured or well yet, but I am healing. I still experience the ups and downs of Lyme disease symptoms; I have flashes where it seems like remission is in reach and stages where I can barely lift my head from the pillow. In spite of all the highs and lows along this bumpy road, I am forever transformed by the lessons learned through joy, pain, and self-discovery. 

Here are those lessons:

The Joy and Pain of Living with Lyme Disease

1. Resist the urge to dwell in a negative headspace for long periods of time.

In the beginning, I had spent countless amounts of energy thinking about the past; what I once was capable of doing, and the social life I had prior to my illness. Dwelling on the past immediately ushered me into a very dark, negative place in my mind. Isolated from the things and people I loved the most, the loneliness was heartbreaking. I felt hopeless, lost and frustrated. I grew too fearful to even imagine a future where joy and dreams could exist. Each day, Lyme disease symptoms appeared to win and overtake the best parts of me.

I am not exactly sure when the shift in my thinking occurred, but my core, my spirit, the very deepest places of me, eventually changed. I let go of anger and gave myself permission to redefine my identity in spite of the struggles I faced. In contrast, by maintaining my focus on the present and not the past, I discovered more peace within my situation. Slowly, I began to see light and hope in the places once occupied by darkness and negativity. I still struggle, but I see an opportunity for personal growth in the midst of my troubles and I choose to embrace it. I am more content nowadays as I take on these health challenges, and much less likely to contemplate the doom and gloom of living with Lyme disease.

2. When one chapter of life closes, a new chapter begins.

Early in my treatment, I came across a wonderful quote from Pastor Brian Houston of Hillsong Church in Australia. It reads:

“Never ever confuse the end of an era in your life as the completion of your destiny.”

The truth of his words gripped my heart with such conviction that I have yet to forget them. He was right. There was no denying that an era in my life had ended. Although I grieved those devastating losses for months, I began to hope and affirm a new beginning — a season of healing and anticipation in my life. I anchored my thoughts to the idea that I still had a purpose and a destiny, and I have not looked back.

Even though I’ve felt strained beneath the weight of a controversial illness like Lyme disease, I know I still have a unique set of gifts and talents worth sharing with the world. I accept that Lyme disease is my present circumstance. Thankfully, circumstances can and do change. However, the destiny for my life does not. It’s so freeing to write that!

3. Take time to celebrate the small victories.

Yes, I still have Lyme disease, but I repeatedly test the notion that says I can’t enjoy life. I frequently take mental vacations from my illness — from obsessing over it, Googling it, and chatting about it. Instead, I try to celebrate small victories and nurture my adventurous spirit. I snap pictures of just about everything I do. That’s become my approach to maintaining a celebratory, productive outlook. When progress seems slow to come, I can look at these visual reminders and see there have been several small victories. These accomplishments help me to combat adversity and renew my optimism.

I hope I will soon beat Lyme disease altogether. I am steadfast in my determination and more resilient than I realized. Ultimately, there are many more healing milestones to celebrate along the way.

My current treatment is aggressive and will continue to be intense for a while. Although someone else could be angry about their experience with chronic Lyme disease, most of the time, I am not. I choose to stay grateful that I have a body that refuses to give up. Another person — a different body — may have quit a long time ago. In the middle of all the chaos, there have been moments of immense happiness over the last several years. I live for those moments. They are the fuel for my soul to see this healing journey through to the end. 

This article was first published on ProHealth.com on December 7, 2015 and was updated on December 4, 2019.

ProHealth Editor and Content Manager Jenny Lelwica Buttaccio, OTR/L, is an occupational therapist and certified Pilates instructor whose life was transformed by Lyme disease, chronic fatigue syndrome, and interstitial cystitis. She is creator of the DVD, A New Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health journalist who writes about her journey on The Lyme Road as she continues to pursue her personal healing with the support of her husband and two rescue pups. You can find her on Instagram: @jenny_buttaccio or Twitter: @jennybuttaccio.

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