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Twenty-seven-year-old Laurie Edwards is one of 125 million Americans who have a chronic illness, in her case a rare genetic respiratory disease. Because of medical advances in the treatment of serious childhood diseases, 600,000 chronically ill teens enter adulthood every year who decades ago would not have survived-they and people diagnosed in adulthood face the same challenges of college, career, and starting a family as others in their twenties and thirties, but with the added circumstance of having chronic illness. Life Disrupted is a personal and unflinching guide to living well with a chronic illness: managing your own health care without letting it take over your life, dealing with difficult doctors and frequent hospitalizations, having a productive and satisfying career that accommodates your health needs, and nurturing friendships and a loving, committed relationship regardless of recurring health problems. Laurie Edwards also addresses the particular needs of people who have more than one chronic illness or who are among the twenty-five million Americans with a rare disorder. She shares her own story and the experiences of others with chronic illness, as well as advice from life coaches, employment specialists, and health professionals. Reading Life Disrupted is like having a best friend and mentor who truly does know what you're going through.
This guide provides inspiration, advice on emotional coping, and support on living your best life with chronic illness from someone who's been there. The emphasis in this book is on LIVING your life, not just enduring it.
Drawing on input from people with long-term ailments, this book points the way to achieving the best possible life under the circumstances.
In the United States, chronic diseases currently account for 70 percent of all deaths, and close to 48 million Americans report a disability related to a chronic condition. Today, about one in four Americans have multiple diseases and the prevalence and burden of chronic disease in the elderly and racial/ethnic minorities are notably disproportionate. Chronic disease has now emerged as a major public health problem and it threatens not only population health, but our social and economic welfare. Living Well with Chronic Disease identifies the population-based public health actions that can help reduce disability and improve functioning and quality of life among individuals who are at risk of developing a chronic disease and those with one or more diseases. The book recommends that all major federally funded programmatic and research initiatives in health include an evaluation on health-related quality of life and functional status. Also, the book recommends increasing support for implementation research on how to disseminate effective longterm lifestyle interventions in community-based settings that improve living well with chronic disease. Living Well with Chronic Disease uses three frameworks and considers diseases such as heart disease and stroke, diabetes, depression, and respiratory problems. The book's recommendations will inform policy makers concerned with health reform in public- and private-sectors and also managers of communitybased and public-health intervention programs, private and public research funders, and patients living with one or more chronic conditions.
Comfort, understanding, and advice for those who are suffering--and those who care for them. Chronic illness creates many challenges, from career crises and relationship issues to struggles with self-blame, personal identity, and isolation. Beloved author Toni Bernhard addresses these challenges and many more, using practical examples to illustrate how mindfulness, equanimity, and compassion can help readers make peace with a life turned upside down. In her characteristic conversational style, Bernhard shows how to cope and make the most of life despite the challenges of chronic illness. Benefit from: • Mindfulness exercises to mitigate physical and emotional pain • Concrete advice for negotiating the everyday hurdles of medical appointments, household chores, and social obligations • Tools for navigating the strains illness can place on relationships Several chapters are directed toward family and friends of the chronically ill, helping them to understand what their loved one is going through and how they can help. Humorous and empathetic, Bernhard shares her own struggles and setbacks with unflinching honesty, offering invaluable support in the search to find peace and well-being.
THE CHRONIC ILLNESS WORKBOOK brings clarity and order to what feels like an unmanageable and isolating experience. It shows both those who are ill and those who care for them how to live a full and meaningful life despite undeniable difficulties. Using her extensive experience with chronic illness patients, Patricia Fennell has created an original, comprehensive, research-validated approach that considers not only the physical aspects of chronic illness, but the psychological, social, and economic apsects as well.
“An important antidote to the dogmatic ‘kale and vitamins’ tone of most ‘self-help’ literature.” —Alexa Tsoulis-Reay, senior writer, New York magazine Popular blogger Ilana Jacqueline offers smart and savvy advice, humor, and practical tips for living with an invisible chronic illness. Do you live with a chronic, debilitating, yet invisible condition? You may feel isolated, out of step, judged, lonely, or misunderstood—and that’s on top of dealing with the symptoms of your actual illness. Take heart. You are not alone, although sometimes it can feel that way. Written by a blogger who suffers from an invisible chronic illness, Surviving and Thriving with an Invisible Chronic Illness offers peer-to-peer support to help you stay sane, be your own advocate, and get back to living your life. This compelling guide is written for anyone suffering with an illness no one can see—such as postural orthostatic tachycardia syndrome (POTS), chronic fatigue syndrome (CFS), fibromyalgia, multiple chemical sensitivity (MCS), Lyme disease, lupus, dysautonomia, or even multiple sclerosis (MP). This book will tell you everything you need to know about living with a complicated, invisible condition—from how to balance sex, dating, and relationships to handling work and school with unavoidable absences. You’ll also learn to navigate judg-y or skeptical relatives and strangers and—most importantly—manage your medical care. Suffering from a chronic illness doesn’t mean you can’t live an active, engaged life. This book will show you how.
"Should be read by anyone with a body. . . . Relentlessly researched and undeniably smart." —The New York Times Named one of BuzzFeed's "Best Books of 2021" What Doesn't Kill You is the riveting account of a young journalist’s awakening to chronic illness, weaving together personal story and reporting to shed light on living with an ailment forever. Tessa Miller was an ambitious twentysomething writer in New York City when, on a random fall day, her stomach began to seize up. At first, she toughed it out through searing pain, taking sick days from work, unable to leave the bathroom or her bed. But when it became undeniable that something was seriously wrong, Miller gave in to family pressure and went to the hospital—beginning a years-long nightmare of procedures, misdiagnoses, and life-threatening infections. Once she was finally correctly diagnosed with Crohn’s disease, Miller faced another battle: accepting that she will never get better. Today, an astonishing three in five adults in the United States suffer from a chronic disease—a percentage expected to rise post-Covid. Whether the illness is arthritis, asthma, Crohn's, diabetes, endometriosis, multiple sclerosis, ulcerative colitis, or any other incurable illness, and whether the sufferer is a colleague, a loved one, or you, these diseases have an impact on just about every one of us. Yet there remains an air of shame and isolation about the topic of chronic sickness. Millions must endure these disorders not only physically but also emotionally, balancing the stress of relationships and work amid the ever-present threat of health complications. Miller segues seamlessly from her dramatic personal experiences into a frank look at the cultural realities (medical, occupational, social) inherent in receiving a lifetime diagnosis. She offers hard-earned wisdom, solidarity, and an ultimately surprising promise of joy for those trying to make sense of it all.
This life-affirming, instructive, and thoroughly inspiring book is a must-read for anyone who is - or who might one day be - sick. It can also be the perfect gift of guidance, encouragement, and uplifting inspiration to family, friends, and loved ones struggling with the many terrifying or disheartening life changes that come so close on the heels of a diagnosis of a chronic condition or life-threatening illness. Authentic and graceful, How to be Sick reminds us of our limitless inner freedom, even under high degrees of suffering and pain. The author - who became ill while a university law professor in the prime of her career - tells the reader how she got sick and, to her and her partner's bewilderment, stayed that way. Toni had been a longtime meditator, going on long meditation retreats and spending many hours rigorously practicing, but soon discovered that she simply could no longer engage in those difficult and taxing forms. She had to learn ways to make "being sick" the heart of her spiritual practice - and through truly learning how to be sick, she learned how, even with many physical and energetic limitations, to live a life of equanimity, compassion, and joy. And whether we ourselves are ill or not, we can learn these vital arts from Bernhard's generous wisdom in How to Be Sick.