I was thirteen years old when I wrote my very first journal entry on May 1, 2005. I was in the seventh grade, and my world had begun crumbling down around me at a terrifying pace.
One day I was an accomplished athlete playing her heart out in a competitive soccer league, and the next I was using a wheelchair to get from one junior high class to another.
Seemingly out of the blue, my body had decided I was the enemy, sending bolts of pain shooting through my neck, back, and legs every minute of the day until I couldn’t even manage walking anymore. The worst part was that no one seemed to have any idea what was going on.
What came next was a long, frightening, and often frustrating search for answers. As my parents and I went to doctor after doctor without any clear explanation for my rapidly deteriorating health, my fear and anxiety skyrocketed. Wanting to help me cope, my mom suggested I write down all my experiences in a journal. I found an old notebook we had around the house, and hoping to make sense of my overwhelming new feelings, I began to write.
When I composed those first few entries, I had no idea how important that journal would turn out to be, as a place to record my confusion and the dark emotions that sometimes engulfed me. Writing allowed me to bear witness to myself—a self I felt no one else in the world could even see, let alone understand.
My isolation grew
This feeling of isolation only grew during the years that I grappled with chronic illness. Furthermore, I struggled greatly with the concept of hope. Looking back through adult eyes, I can see that my mounting despair was due, in large part, to the fact that I had no role models for my new way of living. I needed someone to show me that I could survive this experience and go on to lead a joyful, meaningful life.
Unable to imagine any light at the end of this tunnel, I found myself stuck in a deep, dark hole with seemingly no way out. But, while I did not have anybody like me to guide my way, I did have the love and support of family and friends, and this kept me going. They held my hands in that place of darkness, encouraging me to keep traveling the long and winding path that finally brought me out of the abyss—and to better health.
Once I found my way out of that bleak situation, and for many years after, my journal collected dust. It had served its purpose, and now I couldn’t bear to revisit the traumatic events I had detailed so painstakingly all those years before. When I dared to divulge anything about that part of my life to the outside world, it was only through carefully crafted inspirational messages on social media.
And then…a shift
These posts were always truthful, but deep inside I knew that their relentlessly upbeat tone didn’t accurately reflect my lived experience. But then, something unexpected shifted my perspective.
One day, I came across an old photo of me taken when my health had first begun declining. Being confronted with evidence of the difficulty I’d overcome at such a young age brought back a flood of emotions I had been denying for so many years. Suddenly, I felt compelled to share the reality of how disheartened and despondent I’d been as a young teen.
I knew that if this picture could stir up such deep feelings in me, it might do the same for others. For the first time, I felt ready to reveal something authentic about what I’d gone through with chronic illness.
I opened Instagram, selected the picture of me in the wheelchair, and in the caption beneath it, I wrote my truth—just as I had in my journal years before. My experience had been scary, frustrating, and hard. It still was hard. And it pained me to see this photo of a girl who I knew was about to endure so much anguish.
It broke my heart to see her smiling for the camera, unaware of how upside down her life was about to become. But as I weighed whether to share this more in-depth post, I knew that if even one person who saw this picture could feel the sense of connection I had so desperately longed for back then, I felt my discomfort would be worth it. I held my breath and pressed “Share.”
An Instagram moment
The response to that Instagram post floored me! Comments poured in from followers who had no idea that I had ever really struggled. Friends who had only known me in my adult years noted that since I always came off so positive, they assumed I had always been that way, even as a sick teen. One acquaintance I had known for years said she couldn’t picture me ever being depressed.
That day, I resolved to finally talk about what had really happened to me. No more glorified social media highlight reels, just the raw truth from someone who had gone through it all and had finally reached a better place.
Using my journal as a guide, I began to write my story all over again. Yet, as I did, I came to recognize that this wasn’t just my story. The experience of my chronic illness had involved my whole family, and much of the picture was unknown to the girl writing that journal.
My mother’s perspective
Wanting to tell this story as completely as possible, I enlisted my mom, Dorothy, to help fill in the blanks. Throughout this book, she provides insight into everything from finding the right doctors to how helpless a mother feels in the face of her child’s serious health problems.
According to the US Centers for Disease Control and Prevention, some 40 percent of school-age children and adolescents have at least one chronic illness. We don’t know how many of them face fear and ambiguity in addition to physical pain as they fight for their experiences to be recognized by family, friends, and the medical establishment.
I was lucky enough to have fierce advocates by my side, but not everyone is so fortunate. Some struggle in isolation, without loving hands to help guide them out. I sincerely hope this memoir can serve as a beacon of light for anyone who needs it. This is the story of my life with Lyme disease.
Excerpted from Finding Resilience: A Teen’s Journey Through Lyme Disease, by Rachel Leland and Dorothy Kupcha Leland. (River Grove Books, © 2023.)