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Suffering the Silence: Chronic Lyme Disease in an Age of Denial
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 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.
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.
232 pages, Paperback
First published September 8, 2015
8 people are currently reading
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Displaying 1 - 8 of 8 reviews
February 18, 2016
I've read several books on Lyme disease, but none have so succinctly captured this illness from the perspective of one living with the health complications and the surrounding controversy. I have late-stage Lyme disease, contracted at around the age of five but not properly diagnosed until four decades later. With this book, Allie Cashel captures what it's like to know you're physically sick, to feel your body deteriorating, only to be told by countless doctors that "it's all in your head".
Cashel shares her own harrowing story, along with brief accounts of others suffering similar problems. These are powerful moments in which those of us dealing with this disease feel a kindred spirit. There is much power in the telling and sharing. She also clearly and concisely defines the controversy over the "chronic" state of Lyme disease that continues to divide the medical field, too often leaving patients lost in the mayhem.
If you have or suspect you have Lyme disease, you'll definitely want to read this book. I suggest you also pass out copies to family and close friends. Maybe even buy a copy for your doctor. This disease is horribly under-treated, misdiagnosed, and misunderstood. Allie Cashel lays it all bare, so that readers get a true sense of what we experience, and there is no better gift than the understanding and compassion that will certainly come with reading this book.
Cashel shares her own harrowing story, along with brief accounts of others suffering similar problems. These are powerful moments in which those of us dealing with this disease feel a kindred spirit. There is much power in the telling and sharing. She also clearly and concisely defines the controversy over the "chronic" state of Lyme disease that continues to divide the medical field, too often leaving patients lost in the mayhem.
If you have or suspect you have Lyme disease, you'll definitely want to read this book. I suggest you also pass out copies to family and close friends. Maybe even buy a copy for your doctor. This disease is horribly under-treated, misdiagnosed, and misunderstood. Allie Cashel lays it all bare, so that readers get a true sense of what we experience, and there is no better gift than the understanding and compassion that will certainly come with reading this book.
October 5, 2015
It took me two days of reading, could be one day. I read through Allie's own experiences with various healers and her father's experiences as ell. I read about her struggles through school and i could totally relate. Allie does not beat around the bush. She addresses the issues directly and as best as she knows how. My favorite line was near the end, when she wrote, ""With the power of words -- spoken, written, posted, emailed -- the narratives of the Lyme community can change the experience of future patients." Allie Cashel. Bravo Allie, Bravo.
Every Lyme patient needs to read this . . .
Every Lyme patient needs to read this . . .
March 17, 2024
I read this in just two days - it's a very interesting story of the author's struggle with her health. She is told that she has chronic Lyme disease, but only about 50% of doctors at the time the book was written (2014 or so) actually believed there was such a thing. From all I've read, I do believe there is such a thing. I would expect and hope that doctors' attitudes towards chronic Lyme have changed since Long Covid - as the illnesses are very similar - with a multitude of disparate symptoms including chronic fatigue, muscle aches, fevers, brain fog, and on and on. Too many chronic Lyme patients have been told by doctors that "it's all in their head." Hopefully doctors are starting to see that they need to take these patients and their health challenges more seriously.
February 22, 2022
My best friend's son has Lyme Disease and this book accurately describes what sufferings they go through. Allie's story along with others depict the challenges and frustrations of this illness from the patient's side.
Definitely would recommend to someone recently diagnosed.
Definitely would recommend to someone recently diagnosed.
December 8, 2015
I've heard about Lyme disease. But how much did I know about Lyme disease? Not much.
I heard about this book from a friend, who is a friend of the author. The book was just published, and its a chronicle of what Lyme disease is, and the controversy behind it. I never even knew that there was so much debate! Basically, the question is: Is Lyme disease chronic, or is it a psychosomatic realization of something else that's going on? As someone who speaks openly about suffering with Lyme disease, Allie Cashel's bias is going to be towards the belief that it is a real infection. Despite the subjectivity of blood testing, she and many others like her know that it is a chronic disease that can relapse at different points in their lives. What makes Cashel's book shine, though, is her matter-of-fact interviews of people from both sides of the debate. When interviewing a doctor who was of the belief that Lyme was not chronic, no bias was given in her writing. As I read, I felt that I understood at least the basics of both sides of the debate. And for someone who has no prior knowledge of this disease, it is especially important to be able to read both sides.
Cashel's writing style is welcoming enough to let in any reader. No background in science or infectious diseases necessary. Whether she is recounting statistics from her research, her interviews with others who suffer from Lyme disease, or her outlook on the future of research, it is all in a style that is easygoing yet knowledgeable.
The was really only one thing that bothered me about the book, and really was an issue with the copyeditor (or proofreader). Grammar and punctuation mistakes stick out like a sore thumb.
I heard about this book from a friend, who is a friend of the author. The book was just published, and its a chronicle of what Lyme disease is, and the controversy behind it. I never even knew that there was so much debate! Basically, the question is: Is Lyme disease chronic, or is it a psychosomatic realization of something else that's going on? As someone who speaks openly about suffering with Lyme disease, Allie Cashel's bias is going to be towards the belief that it is a real infection. Despite the subjectivity of blood testing, she and many others like her know that it is a chronic disease that can relapse at different points in their lives. What makes Cashel's book shine, though, is her matter-of-fact interviews of people from both sides of the debate. When interviewing a doctor who was of the belief that Lyme was not chronic, no bias was given in her writing. As I read, I felt that I understood at least the basics of both sides of the debate. And for someone who has no prior knowledge of this disease, it is especially important to be able to read both sides.
Cashel's writing style is welcoming enough to let in any reader. No background in science or infectious diseases necessary. Whether she is recounting statistics from her research, her interviews with others who suffer from Lyme disease, or her outlook on the future of research, it is all in a style that is easygoing yet knowledgeable.
The was really only one thing that bothered me about the book, and really was an issue with the copyeditor (or proofreader). Grammar and punctuation mistakes stick out like a sore thumb.
September 12, 2016
Someone gave me this book to read, and I kind of wish I had never heard the disturbing stories of lyme disease recounted in this book. I may never go outside without high socks on again.
October 22, 2015
Allie Cashel has written both an educational and interesting collection profiling those who live with chronic Lyme disease. Her subjects include those in New York and other places around the world. Despite the difficult topic, her stories are surprisingly engaging. As well, we learn numerous coping strategies.
Allie, herself has suffered from the illness, so she speaks from personal experience; this adds a unique personal element when she writes about others who suffer from Lyme disease.
The information included as appendices are easy to follow and include: “A Brief History of Lyme Disease”, “Sample Checklist of Symptoms” and “Lyme Disease Fact Chart”.
Thank you GoodReads for the book.
Allie, herself has suffered from the illness, so she speaks from personal experience; this adds a unique personal element when she writes about others who suffer from Lyme disease.
The information included as appendices are easy to follow and include: “A Brief History of Lyme Disease”, “Sample Checklist of Symptoms” and “Lyme Disease Fact Chart”.
Thank you GoodReads for the book.
November 27, 2019
Some good information and a summary of the conflict between the medical establishment and doctors who treat Lyme disease. More than half the book is a collection of stories of people who are suffering from Lyme disease
Displaying 1 - 8 of 8 reviews