By Jenny Lelwica Buttaccio

October 24, 2013, was probably an average Thursday in most people’s lives. 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 declining health — 18 months of which I 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.”

I was both scared and relieved to hear the news. I was afraid because, well, I knew I would be embarking on one of the greatest challenges of my life. At the same time, I was relieved because I was no longer in the dark about what to call the mysterious illness wreaking havoc on my body.

Interconnected symptoms

The list of diagnoses I had collected over the years — from interstitial cystitis (IC) and myalgic encephalomyelitis (ME/CFS) to fibromyalgia and postural orthostatic tachycardia syndrome (POTS) — all suddenly seemed interconnected. I knew the path to reclaiming my health 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 that would slowly help me rebuild my life, one tiny step at a time. There were layers of damage to address as a result of going years, maybe even decades, with undiagnosed, systemic infections.

My healing would be marked by ups and downs and the inevitable changing of healthcare providers. I endured stages where I could barely lift my head from the pillows, and at other times, it seemed as though recovery was within reach. After a decade of treatment, I reached a point of medical stability, and my energy levels and symptoms became predictable — a place I’ve been able to maintain for a year and a half.

Despite the highs and lows along this healing path, I am forever transformed by the lessons learned through the joy, pain, and self-discovery of the last decade. Here are those lessons:

Don’t dwell in negative headspaces for too long

When I first got sick, I spent countless amounts of energy thinking about the past, what I once could do, and the social life I had before my illness. Dwelling on the past immediately ushered me into a 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. Sickness 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, 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 ever-changing situation. I didn’t improve automatically, but I began to see light and hope in the places once occupied by darkness and negativity. I started to believe I was helpable, which gave me the strength to tackle the challenges I would encounter as I healed.

When one chapter of life closes, a new chapter begins

Early in my treatment, I came across a video discussing the hardships of life many people encounter. The video’s speaker reminded viewers that, even though an era in their lives may have ended for whatever reason, that “end” wasn’t indicative of their entire future or destiny. Life could still have meaning and purpose.

Although I had never felt more confused or lost in my life, the words from the video gripped my heart with such conviction, and I have yet to forget them. There was no denying that an era in my life ended, and I grieved those devastating losses for years. But at the same time, I began to hope and affirm a new beginning — a season of healing and anticipation — in my life. I anchored my thoughts on the idea that I had a purpose, a destiny, and I didn’t look back.

I knew I still had unique gifts and talents worth sharing with the world. I started a blog to chronicle my road to recovery from Lyme disease and looked for opportunities to get involved with a community of people advocating for better testing, treatment, and change — most of which I did while bedridden. I accepted that Lyme disease was my present circumstance, but I also believed my circumstances could and would change, even if it took years (and it did!).

Take time to celebrate the small victories

Although I still had a chronic illness, I repeatedly tested the notion that I couldn’t enjoy life. I frequently took (and still take) mental vacations from my illness — from obsessing over it, googling it, and chatting about it. Instead, I tried to celebrate the small victories and nurture my adventuresome spirit.

I snapped pictures of just about everything I did: a walk around the block, a trip to a shopping mall, visiting my hometown, a scenic hike. That became my approach to maintaining a celebratory, productive outlook. When progress seemed slow, I could look at these visual reminders and remember that I had already experienced several small victories, and more likely than not, there would be more to come. Seeing these accomplishments helped me combat hopelessness and renew my optimism.

Now, mostly on the other side of Lyme disease, I could be angry about losing some of the best years of my adult life. Certainly, there are losses for me yet to grieve, but at the same time, I choose to stay grateful for a body that refused to give up. Another person — a different body — may have quit a long time ago.

There have been moments of immense happiness in the middle of this longstanding health battle. I lived for those moments, and I probably always will. They were and will be the fuel for my soul to continue to heal whatever aspects of Lyme disease that still remain.

Jenny Lelwica Buttaccio first published this blog in the quarterly newsletter of the Illinois Lyme Association.