Suffering the Silence and Finding a Voice

By Allie Cashel

The following is a guest post by a young author and Lyme patient who has turned her experience into a catalyst to help others find their voice and break the silence around long-term struggles with Lyme disease and other chronic illnesses. You can read more about Allie in our Faces of Lyme section and on her own website, sufferingthesilence.com.

Allie has a new book due out in early September, Suffering the Silence: Chronic Lyme Disease in an Age of Denial. Bay Area Lyme Foundation will be co-hosting a reading and book signing at Books Inc. in Mountainview, CA on Tuesday, September 15^th at 7:00pm.  Come join us at the event and meet this engaging young speaker!

Everyone knew about Lyme disease in the town where I grew up. “Easy to diagnose and simple to treat,” people said. “As long as you get the medicine in you, you’ll be fine.” As a kid, I was always hearing stories about someone who had recently been diagnosed with Lyme – parents, cousins, siblings, pets – and in almost every case, the stories I heard were short.

Even as a very young person, I always knew that most people thought of Lyme as an easily diagnosed and curable infection. Most people don’t know that tick-borne disease can lead to a significantly more debilitating litany of symptoms. Though I grew up in Westchester, NY — one of the most endemic areas of the world for Lyme — I never knew it could cause the crippling pain, exhaustion, seizures, cognitive problems, fertility issues, and life altering damage to the brain and central nervous system that many people deal with every day. I didn’t know that Lyme could make people physically unable to work, attend school, or take part in normal routines that once felt easy and natural to them.

I also didn’t know that I would become one of those patients.

I was originally diagnosed with Lyme disease in 1998 in Irvington, NY when I was seven years old. At fourteen, I was diagnosed again with Lyme and three other tick-borne diseases: Babesiosis, Ehrlichiosis, and Bartonellosis. Since my diagnosis, I have received over six years of oral and intravenous antibiotic therapy. I am now twenty-four, and still experience symptoms today.

My case is a controversial one. The Center for Disease Control and Prevention (CDC), the Infectious Disease Society of America (IDSA), and much of the mainstream medical system still claim that Lyme disease is an easily cured infection. These organizations recommend a maximum of six weeks of antibiotic treatment, and say that after that treatment period the infection is cured. However, as for many people I spoke to growing up, managing my symptoms required a lot more than that standard course of treatment.

In 2009, as a senior at John Jay High School, I experienced first-hand the mainstream dismissal of chronic Lyme disease. That September, I was floored by symptoms of neurological Lyme. In just a few weeks, I lost my ability to read, struggled to speak, had major lapses in my memory, and was in a number of car accidents. That fall, I saw a new group of physicians at a mainstream hospital, many were considered some of the best doctors in the world. They told me that I could not possibly be suffering from an infection because of my treatment history, and that my symptoms were all psychological. It wasn’t until I was treated with another round of antibiotics for Lyme and Babesia, that my symptoms started to subside.

For a long time, I struggled to talk about my experience. Living in a community where everyone seemed familiar with one version of my disease made it difficult to discuss the ways I differed from the norm. I was scared people wouldn’t believe me. I felt ignored, invisible, and silenced.

I soon came to realize that my experience with Lyme was more “normal” than I thought. Thousands of people suffer every day as I suffered—not just from a disease but also from science and society’s inability to accept the disease.

During my senior year at Bard College, in an attempt to better understand the living experience of the chronic Lyme community, I conducted a series of interviews with patients in New York, and around the world. I have since developed those interviews into a book, Suffering the Silence: Chronic Lyme Disease in an Age of Denial (North Atlantic Books, September 2015). My interviews revealed a complex world of silent and invisible suffering within the Lyme community, shaped both by the illness and by the feelings of disdain and disbelief that surround it. I’ve also created a blog inspired by the book — sufferingthesilence.com — an online community for chronic illness patients to share their stories.

In September, I will be touring the United States to promote Suffering the Silence and build dialogue around chronic Lyme, and other chronic invisible conditions like it. [click here for more information about the Mountainview, CA event September 15 and here for other locations around the country.]

The simple act of listening and sharing illness narratives has been an incredibly powerful and healing force in my life. I hope my experience will help to build awareness and reform the perception and treatment of the often silenced, chronic disease community.