Last week, I read in a Dutch women’s magazine about the website Suffering the Silence, created by Allie Cashel and her friend Erica. Allie also wrote a book by the same title, which was published just weeks before. I immediately felt an urge to buy the book and did so on Friday. I just finished it and wanted to share a review.
Suffering the Silence describes Cashel’s own and other people’s struggles with what they see as chronic Lyme disease, but what is deemed a “medically unexplained” syndrome by most mainstream physicians. Allie Cashel was first diagnosed with Lyme disease in 1998 and has been suffering on and off ever since. While she originally found Dr. Bernard Raxlen, a Lyme-literate doctor as they’re called within the chronic Lyme community, other world-renowned doctors denied her infectious disease.
The book consists of four parts. In the first part, Cashel describes her own struggles with Lyme disease, her symptoms and her fight for recogntiion, as well as her self-doubt after famous doctors in Boston deny she is physically ill. She also provides an overview of the Lyme controversy.
In the second part, Cashel broadens the reader’s perspective by allowing other chronic Lyme sufferers to speak out. Many had a hard time getting properly diagnosed and treated for Lyme and its almost inevitable co-infections. Some found relief from long-term antibiotic treatments, while others found they were helped with other, even more non-conventional treatmets, and some found they could not be helped at all.
In part three, Cashel interviews doctors and scientists on all sides of the chronic Lyme controversy. She interviews one of the contributors to the Infectious Disease Society of America (IDSA) guidelines on Lyme dsease, which deny that chronc Lyme disease exists. She also interviews two scientists working on the prvention of Lyme, as well as Dr. Richard Horowitz, a physician who uses an alternative, multi-systemic model of infectious disease. It was at this point that, for the first time, I cringed, because Dr. Horowitz linked Lyme to the autism “epidemic”. While I am not completely opposed to alternative views of autism, it seemd Dr. Horowitz’s reasoning was a bit off.
Part four describes the ways in which people strive to reduce the stigma of Lyme disease and chronic illness in general, as well as the effect these conditions have on a person’s identity. I recognized a lot here, as a person who firmly embraces her identity as a multiply-disabled person. For once, this was seen as understandable, necessary for advocacy even. I liked the affirmation Cashel designed for herself, embracing her status as a Lyme disease sufferer and affirming that other people believed her about this. As a person whose family does not believe in her autism and anything that cannot be seen, and opposes the identification with disabilities, I liked this.
The book is both a captivating memoir and collection of patient stories, and an intriguing work of research into the chronic Lyme disease controversy. I loved it.
Title: Suffering the Silence: Chronic Lyme Disease in an Age of Denial
Author: Allie Cashel
Publisher: North Atlantic Books
Date Published: September 2015