You Don't Look Sick!: Living Well with Invisible Chronic Illness


Joy H. Selak - 2005
    This resource helps you focus on building a meaningful life that contains illness as opposed to a life of frustration and fear. Designed for patients in at all stages of the chronic illness journey, this book will also be illuminating for caregivers and loved ones.From the book: ""I've learned that having a chronic illness is not a prison sentence. It does not mean I must spend the rest of my life feeling depressed and angry, locked away from the world inside my little sick box. It does not mean that I am useless and no longer have any gifts to share, but it may mean that I must develop some new ones.""You Don't LOOK Sick! addresses practical aspects of chronic illness, such as: hiring a doctor managing chronic pain coping with grief and the loss of function winning battles with health and disability insurers countering the social bias against the chronically ill recognizing the limitations of chronics illness care and charting a path for changeIn You Don't LOOK Sick!: Living Well with Invisible Chronic Illness, you will find stories, dialogue, humor, examples, and analogy of the three stages to illustrate a challenging but navigable journey. You will also find suggested reading materials for learning to live well, medical Internet resources, illness-specific Web sites, names and addresses of national associations, and a bibliography of medical books by topic. The short chapters and straightforward language of the book will be helpful for readers who are weary and dispirited. From the authors: "I've learned that having a chronic illness is not a prison sentence. It does not mean I must spend the rest of my life feeling depressed and angry, locked away from the world inside my little sick box. It does not mean that I am useless and no longer have any gifts to share, but it may mean that I must develop some new ones."--Joy H. Selak"My goal is to work with patients so that, like world class athletes, they can perform at their peak capacity. My job is more than giving answers; I must educate, counsel and encourage patients to set goals and implement a personal care program as well as take appropriate medications."--Dr. Steven Overman The authors are experienced public speakers. If you wish to inquire about their availability to speak to patients or health care professionals, please contact Joy Selak by email at JoyWrites@austin.rr.com.

The Two Kinds of Decay


Sarah Manguso - 2008
    In this captivating story, Manguso recalls her struggle: arduous blood cleansings, collapsed veins, multiple chest catheters, depression, the deaths of friends and strangers, addiction, and, worst of all for a writer, the trite metaphors that accompany prolonged illness. A book of tremendous grace, The Two Kinds of Decay transcends the very notion of what an illness story can and should be.

The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering


Melanie Thernstrom - 2010
    Today as much as 10 percent of the population of the United States suffers from chronic pain. It is more widespread, misdiagnosed, and undertreated than any major disease. While recent research has shown that pain produces pathological changes to the brain and spinal cord, many doctors and patients still labor under misguided cultural notions and outdated scientific dogmas that prevent proper treatment, to devastating effect. In "The Pain Chronicles," a singular and deeply humane work, Melanie Thernstrom traces conceptions of pain throughout the ages--from ancient Babylonian pain-banishing spells to modern brain imaging--to reveal the elusive, mysterious nature of pain itself. Interweaving first-person reflections on her own battle with chronic pain, incisive reportage from leading-edge pain clinics and medical research, and insights from a wide range of disciplines--science, history, religion, philosophy, anthropology, literature, and art--Thernstrom shows that when dealing with pain we are neither as advanced as we imagine nor as helpless as we may fear. Both a personal meditation and an intellectual exploration, "The Pain Chronicles "illuminates and makes sense of the all-too-human experience of pain--and confronts with extraordinary grace and empathy its peculiar traits, its harrowing effects, and its various antidotes.

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers


Toni Bernhard - 2010
    And 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 even a life-threatening illness.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. Whether we ourselves are sick now or not, we can learn these vital arts of living well from How to Be Sick.

Backbone: A Memoir


Karen Duffy - 2017
    Half of the United States population suffers from these invisible illnesses where their symptoms are not always obvious to the casual observer. Among them is Karen Duffy, New York Times-bestselling author, former MTV DJ, Revlon model, and actress: she suffers from sarcoidosis, a disorder that causes the growth of inflammatory cells on different organs of the body. In her case, her sarcoidosis is located in her brain, causing her unimaginable pain. For two decades, Duffy has managed to live a full life, despite living in a state of constant pain. In Backbone, a powerful, inspirational, funny, and important manual for surviving pain, Duffy draws on her experience as a patient advocate, trained recreational therapist, and hospice chaplain to illuminate gratifying methods people can use to cope with chronic pain. Backbone is for the massive population of sufferers who are eager to be understood and helped and sends the message that despite the pain, there is a way to seek a good life.

Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness


Paul J. Donoghue - 1992
    Since its first publication, Sick and Tired of Feeling Sick and Tired has offered hope and coping strategies to thousands of people who suffer from ICI. Paul Donoghue and Mary Siegel teach their readers how to rethink how they themselves view their illness and how to communicate with loved ones and doctors in a way that meets their needs. The authors' understanding makes readers feel they have been heard for the first time. For this edition, the authors include a new introduction drawing on the experiences of the many people who have responded to the book and to their lectures and television appearances. They expand the definition of ICI to include other ailments such as depression, addiction, and obsessive-compulsive disorders. They bring the resource material, including Web sites, up to the present, and they offer fresh insights on four topics that often emerge: guilt, how ICI affects the family, meaningfulness, and defining acceptance.

It's All in Your Head


Suzanne O'Sullivan - 2015
    A neurologist's insightful and compassionate look into the misunderstood world of psychosomatic disorders, told through individual case histories

The Man Who Couldn't Stop


David Adam - 2014
    In this captivating fusion of science, history and personal memoir, writer David Adam explores the weird thoughts that exist within every mind, and how they drive millions of us towards obsessions and compulsions.David has suffered from OCD for twenty years, and The Man Who Couldn’t Stop is his unflinchingly honest attempt to understand the condition and his experiences. What might lead an Ethiopian schoolgirl to eat a wall of her house, piece by piece; or a pair of brothers to die beneath an avalanche of household junk that they had compulsively hoarded? At what point does a harmless idea, a snowflake in a clear summer sky, become a blinding blizzard of unwanted thoughts? Drawing on the latest research on the brain, as well as historical accounts of patients and their treatments, this is a book that will challenge the way you think about what is normal, and what is mental illness.Told with fierce clarity, humour and urgent lyricism, this extraordinary book is both the haunting story of a personal nightmare, and a fascinating doorway into the darkest corners of our minds.

The Lady's Handbook for Her Mysterious Illness


Sarah Ramey - 2020
    Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological.The Lady's Handbook for Her Mysterious Illness is a memoir with a mission, to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions.Ramey's pursuit of a diagnosis and cure for her own mysterious illness is a medical mystery that she says reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connection to the state of our microbiomes.

What Doesn't Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt


Tessa Miller - 2021
    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 yearslong 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.

Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine


Michele Lent Hirsch - 2018
    She did.Sophie navigates being the only black scientist in her lab while studying the very disease, HIV, that she hides from her coworkers.For Victoria, coming out as a transgender woman was less difficult than coming out as bipolar.Author Michele Lent Hirsch knew she couldn't be the only woman who's faced serious health issues at a young age, as well as the resulting effects on her career, her relationships, and her sense of self. What she found while researching Invisible was a surprisingly large and overlooked population with important stories to tell.Though young women with serious illness tend to be seen as outliers, young female patients are in fact the primary demographic for many illnesses. They are also one of the most ignored groups in our medical system--a system where young women, especially women of color and trans women, are invisible.And because of expectations about gender and age, young women with health issues must often deal with bias in their careers and personal lives. Not only do they feel pressured to seem perfect and youthful, they also find themselves amid labyrinthine obstacles in a culture that has one narrow idea of womanhood.Lent Hirsch weaves her own harrowing experiences together with stories from other women, perspectives from sociologists on structural inequality, and insights from neuroscientists on misogyny in health research. She shows how health issues and disabilities amplify what women in general already confront: warped beauty standards, workplace sexism, worries about romantic partners, and mistrust of their own bodies. By shining a light on this hidden demographic, Lent Hirsch explores the challenges that all women face.

Girl in the Dark


Anna Lyndsey - 2015
    She was ambitious and worked hard; she had just bought an apartment; she was falling in love. But then she started to develop worrying symptoms: her face felt like it was burning whenever she was in front of the computer. Soon this progressed to an intolerance of fluorescent light, then of sunlight itself. The reaction soon spread to her entire body. Now, when her symptoms are at their worst, she must spend months on end in a blacked-out room, losing herself in audio books and elaborate word games in an attempt to ward off despair. It was during this period she began to write this book.

My Stroke of Insight: A Brain Scientist's Personal Journey


Jill Bolte Taylor - 2006
    Through the eyes of a curious scientist, she watched her mind deteriorate whereby she could not walk, talk, read, write, or recall any of her life. Because of her understanding of the brain, her respect for the cells in her body, and an amazing mother, Jill completely recovered. In My Stroke of Insight, she shares her recommendations for recovery and the insight she gained into the unique functions of the two halves of her brain. When she lost the skills of her left brain, her consciousness shifted away from normal reality where she felt "at one with the universe." Taylor helps others not only rebuild their brains from trauma, but helps those of us with normal brains better understand how we can consciously influence the neural circuitry underlying what we think, how we feel and how we react to life's circumstances.

Chocolate Vicodin: My Quest for Relief from the Headache that Wouldn't Go Away


Jennette Fulda - 2011
    Yes, she's tried everything: intravenous drugs, chiropractic adjustments, acupuncture, subliminal messaging, marijuana (for medical purposes only), heavy drinking (which just made it hurt more), and lots and lots of chocolate. A pint of ice cream makes her feel better, but her insurance doesn't cover mint chocolate chip.In this painfully honest, smart, and funny memoir, the popular PastaQueen.com blogger who chronicled her nearly two hundred pound weight loss in Half-Assed shares her incredible journey to find relief from a chronic headache. As she visits countless doctors, indulges all manner of unsolicited advice from the Internet, and investigates every possible cause, from a brain tumor to a dead twin living in her brain, Jennette considers what it means to suffer, how to live with pain, and why the best treatment might be the simplest: laughter.

All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache


Paula Kamen - 2005
    While she was putting in her contacts, the left lens disturbed a constellation of nerves behind her eye. The pain was more piercing than that of any other headache she had ever experienced. More than a decade later, she still has a headache-the exact same headache. From surgery to a battery of Botox injections to a dousing of Lithuanian holy water, from a mountain of pharmaceutical products to aromatherapy and even a vibrating hat, All in My Head chronicles the sometimes frightening, usually absurd, and always ineffective remedies Kamen-like so many others-tried in order to relieve the pain. Beleaguered and frustrated by doctors who, frustrated themselves, periodically declared her pain psychosomatic, she came to understand the plight of the millions who suffer chronic pain in its many forms. Full of self-deprecating humor and razorsharp reporting, All in My Head is the remarkable story of patience, acceptance, and perseverance in the face of terrifying pain.