I visited bookstores in my professional and personal travels across the country with a simple question to the booksellers: “What book would you recommend to someone diagnosed with an incurable, but not fatal, illness?” The frequent response was a perplexed look, sometimes accompanied by scratching the head or chin. At best, they directed me to books focused on living a healthy lifestyle—often through a diet plan of unproven value. A few pointed to books focused on a very specific disease. These invariably dealt with an unconventional and poorly supported approach to treatment. But the booksellers with whom I visited were at a loss for a book addressing the many issues faced by those of us living with incurable ailments leading to many years of an altered lifestyle:
• How do we get physicians to take our health complaints seriously?
• Where do we turn when doctors acknowledge our ailment with upturned hands and confess they don’t know how to help?
• How do we deal with the overwhelming sense of loss with an untreatable diagnosis—one sure to produce profound changes in our life?
• How do we address those whose reaction to our ailment increases our suffering?
• Can we live well with inescapable pain?
• How do we avoid living in a state of fear when facing an uncertain prognosis?
• Should we try to keep our disease a secret from others?
• How do we choose between treatment options when each could cause harm?
• How do we tell if new symptoms are from our chronic disease or signs of some new ailment?
• How do we live with regret when an ailment is a result of choices we made?
• How can those who love us help?
As a pharmacist and biomedical scientist living with several incurable ailments, I understand the travails patients with chronic illness face. I wrote to help patients and those who care for them find answers to these important questions. When There Is No Cure provides encouragement and hope to those navigating the troubled waters of chronic illness.
“I wanted to cry just reading the table of contents. The author gets it! He understands the lonely path of those of us with chronic illness.”
—Elizabeth, a patient with lupus
“This is a book that I wholeheartedly recommend for fellow sufferers of a chronic disease. It takes the reader on a journey that covers many of the concerns a person with a chronic disease has—such as how you can handle your illness, how to interact with doctors, how to handle other people’s responses to your illness, and how others can help. I will use this as a guide in my journey with my chronic disease.”
—Lisa, a patient with dermatomyositis
“You can feel the pain of his maladies and yet the author’s powerful commitment to not allow it to affect the responsibilities of a father, a husband, or an educator. Most of all, I was moved by his heart in honestly sharing the journey that it might offer encouragement to those who find themselves similarly afflicted when there is no cure. This book should be required reading by every medical student.”
—Edward Langston, MD, family physician (retired) and former chairman of the Board of Trustees for the American Medical Association
“This book touched my heart. It is filled with practical advice and hope for patients and healthcare providers. Very pertinent and encompassing, it is filled with pearls of wisdom. This book should be on the reading list of all who care for, live with, or know individuals with chronic suffering. His journey and acquired wisdom are a reminder that people can thrive despite a chronic disorder and that indeed ‘life is more than good health.’”
—Charles E. Sanders, Jr., MD, FACP, FACR, rheumatologist and former vice president of medical education and research, Mount Carmel Health System