Allie Cashel has suffered from chronic Lyme disease for sixteen years—but much of the medical community refuses to recognize her symptoms as the result of infectious disease. In Suffering the Silence: Chronic Lyme Disease in an Age of Denial, Cashel paints a living portrait of what is often called post-treatment Lyme syndrome, featuring the stories of chronic Lyme patients from around the world and their struggle for recognition and treatment.
In the United States alone, at least 300,000 people are diagnosed with Lyme disease each year, and it is estimated that 20 percent of them go on to develop chronic symptoms of the disease, including (but not limited to) muscle and joint pain; digestive problems; extreme fatigue, confusion, and dizziness; sensations of burning and numbness; and immune-system dysfunction. Before reaching a final diagnosis, many of these patients are misdiagnosed with diseases and conditions like lupus, multiple sclerosis, fibromyalgia, chronic fatigue syndrome, depression, anxiety, and even dementia. Despite these numbers and routine misdiagnoses, The Centers for Disease Control and Prevention (CDC) and Infectious Diseases Society of America (IDSA) claim it is impossible for the Lyme bacteria to survive in the body after standard antibiotic therapy. For these chronic patients who have their suffering routinely dismissed by doctors—and even family and friends—the social effects of the illness can be as crippling as the disease itself. Suffering the Silence is a personal and provocative call to break the stigma and ignorance that currently surrounds chronic Lyme disease and other misunderstood chronic illnesses—but it is also a message of hope and comfort for Lyme sufferers, encouraging them to share their stories, seek out treatment, and remember that they are not alone.
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Allie Cashel was first diagnosed with Lyme disease in June of 1998; she has been a sufferer of Lyme, Babesiosis, Ehricliosis, and Bartonellosis for sixteen years. While studying at Bard College, she conducted a series of interviews with Chronic Lyme patients in New York and around the world, revealing a complex world of suffering within the Lyme community. Cashel now works as a passionate advocate for increased awareness of Lyme disease: she is on the Junior Board of the Tick Borne Disease Alliance, guest lectures at Bard College about her work, and has created the online community "Suffering the Silence" to build awareness around Lyme and other tick-borne illnesses.Review:
"Suffering the Silence is a call to arms. It's a call to action. It challenges that there's no reason for hundreds of thousands of people to be suffering when something can be done to give them their lives back. And because of Allie Cashel's emotional and physical bravery, the commitment she made to researching and interviewing and showing all sides of the story, and the empathetic ways she continues to bring those who have suffered in isolation into the light, we're all one step closer to finishing that fight." - BlogHer.com
"Ultimately, this book is a story of hope. That health can improve, that strength can be found by connecting with others traveling a similar road, and that by sharing our stories we can all help bring about a better world for those afflicted with Lyme disease." - LymeDisease.org
"The book 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... It is more than a collection of stories. It is a genuine call to action with an ambitious objective to change public perceptions (and misunderstandings)... 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." - Bay Area Lyme Foundation
"This shared collection of stories has a higher agenda in restoring the faith in human community and strength, even for someone who has not been touched by the misfortune of Lyme disease. Whilst the experiences described in the book are all starkly different in terms of the finer details; age, location and gender, the message seems universal, and that is what makes for such an enjoyable read." - The Coffee House, Copyhouse Press of London
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