“We just have to speak up so that people can get better.” It’s a pretty straight forward line in the transcript of one of the stories in Allie Cashel’s new book Suffering the Silence: Chronic Lyme Disease in an Age of Denial (2015), but it’s also a call to action — a call inviting others to find their voices and share their stories to create the public momentum for change. Lyme disease is an epidemic that should be of concern to the general public and yet has too little awareness and far too few answers.
Last week, Allie Cashel read from her book at a special launch event for the new publication at Books Inc. The book chronicles her own battle with Lyme disease and those of several others she interviewed to learn more about the frustrating and perplexing mystery of Lyme, including her father who was first infected with Lyme some 30-plus years ago. The book, which started out as a personal exploration, then a college thesis, is a balanced and authoritative read, presenting straightforward facts poignant reflections about the many complexities that surround the challenging diagnosis and treatment of Lyme disease. Allie’s discussion of the book and her learning process that followed the reading was equally candid and moving.
And, it’s true that part of that call for others to speak up and share their story is in hopes of creating more empathy and understanding for the many who feel alone or alienated. The stories in the book very convincingly depict the stigma that sends many into personal retreat when dealing with Lyme. “When nobody in your family has had it, you don’t know anybody in town that’s ever had it, doctors are telling you that you don’t have it, just finding somebody that says, ‘I understand,’ can save your life.”
Allie’s book is more than a collection of stories. It is a genuine call to action with an ambitious objective to change those public perceptions (and misunderstandings). Lyme disease affects over 300,000 new patients every year and a good percentage – due to misdiagnosis or failed treatments – go on to suffer for countless years. But most are in hiding. Lyme disease is not a readily recognizable disease or a comfortable one to discuss. Allie’s philosophy is that only by sharing these stories can we make people more aware, can we help the public recognize the significance of the epidemic and the need to find some better answers. Argues on of the patients in the book, “Look, just do me a favor and make people want to change this. This isn’t cancer; it shouldn’t be impossible to cure. So let’s find something that will do it. Let’s get people excited about making this go away. Maybe then I’ll get my life back.”
At Bay Area Lyme, we share Allie’s belief and we invite you to share your story.
Lyme indeed has many faces – young, old, male, female, parent, child, rocker, businessman, athlete, actor, musician, artist … just see some of the stories and the diversity they reflect in our “Faces of Lyme” section here on the website. You will also find Allie’s story told in her own words.
And if you have a story to tell, we’d love to help you share it. Click here for me information.
Together, we can create the momentum for change.