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Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties
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Product Description
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.
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.
"Eloquent and funny. If you’ve experienced chronic illness, or if you care for someone who has, you need to read this book."—Amy Tenderich, coauthor of Know Your Numbers, Outlive Your Diabetes
“Chronic illness needn’t change your life for the worse if you let Laurie be your guide to everything from doctors to dating to why we sweat the small stuff (because sometimes that’s all we feel we can control). Laurie Edwards is a compassionate confidante, an understanding friend, and a witty chronicler of all things chronic illness, even the not-so-pretty parts. Bravo!”—Susan Milstrey Wells, author of A Delicate Balance: Living Successfully with Chronic Illness
“As a person living with a chronic illness, it is inspiring to hear such a fresh and important voice. Laurie Edwards puts adversity in its place and teaches us to not only go on living, but to create a better life. High five, sister!”—Kris Carr, author of Crazy, Sexy, Cancer
“For those young people suffering from chronic illness, Life Disrupted offers strategy, advice, and hope. For those of us lucky enough to grow up without illness, it tells us how to be respectfully helpful to friends, family, and colleagues in this situation. Superb and engaging writing.”—Paul F. Levy, president and CEO of Beth Israel Deaconess Medical Center, Boston and founder of the Running A Hospital Blog
“A wise and valuable addition to the literature on chronic illness, illuminating with verve and wit the particular struggles faced by young adults. Ms. Edwards is a delightful and seasoned guide. She knows what the issues are, how to decipher them, and how to live a rich life while shuttling between hospitals and high heels.”—Dorothy Wall, author of Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome
“Laurie Edwards is a generous writer who describes with grace and clarity how she has learned to live with multiple chronic conditions. This book is a gift to young people who are navigating chronic illness, school, and their new adulthood all at once.”—Jessie Gruman, author of AfterShock: What to Do When the Doctor Gives You—Or Someone You Love—a Devastating Diagnosis
“Laurie Edwards is a life-enhancing writer. If you’re a person with chronic illness, you should always keep this wonderful book handy.”—Sarah M. Whitman, M.D., psychiatrist specializing in chronic pain management
“Laurie Edwards has written a moving and meaningful description of the issues that people face when they live with unpredictable and debilitating disease. Her words reminded me of my own struggles—and her laughter helped me remember the good times, too.”—Rosalind Joffe, author of Women, Work, and Autoimmune Disease: Keep Working, Girlfriend! and president of Chronic Illness Coach
“Both a practical and a philosophical guide for those navigating this heretofore uncharted territory.”—Lynn Royster, J.D., Ph.D., director of The Chronic Illness Initiative at The School for New Learning at DePaul University
“Life Disrupted is moving and often humorous, as Laurie Edwards informs readers about how they can navigate successfully through the medical storms, live well, and maintain fulfilling relationships.”—Douglas Whynott, author of Giant Bluefin and A Country Practice
“The time for patient empowerment has come and Laurie Edwards’ voice is leading the way. As a fellow lifelong patient, I appreciate her honesty in disclosing private patient moments which reflect the often unspoken truth of living with chronic illness.”—Tiffany Christensen, author of Sick Girl Speaks!: Lessons and Ponderings Along the Road to Acceptance
"Although illness memoirs and recovery books saturate the market, this one makes a contribution to the literature with its voice of a young woman dealing with a lifetime of chronic illness. Edwards, who is 27 and mana
Product Details
- Amazon Sales Rank: #278318 in Books
- Published on: 2008-06-24
- Released on: 2008-06-24
- Original language: English
- Number of items: 1
- Binding: Paperback
- 288 pages
Features
- ISBN13: 9780802716491
- Condition: NEW
- Notes: Brand New from Publisher. No Remainder Mark.
- Click here to view our Condition Guide and Shipping Prices
Editorial Reviews
From Booklist
One’s twenties and thirties are a time for training, launching careers, starting families. For 27-year-old Edwards, there is also the matter of the genetic respiratory disease she suffers. In addition to having 1 of only 1,000 documented cases of PCD (primary ciliary dyskinesia), she has bronchiectasis, celiac disease, and thyroid disease. It has been “difficult to tease out where one disease ended, and another began,” and she has spent most of her life “looking for explanations of my illness that match my experience of illness.” Her research and interviews with others reinforced that she isn’t alone in her predicament. She cites real lives to illuminate such matters as the pitfalls of explaining rare and/or “invisible” illnesses and to address the financial downside of chronic illness with flexible approaches to enabling chronically ill workers to stay in the workforce. Soberingly, she imparts that more than 75 percent of marriages in which chronic illness figures end in divorce. Still, there’s that other 25 percent. --Whitney Scott
Review
“Eloquent and funny. If you’ve experienced chronic illness, or if you care for someone who has, you need to read this book.”—Amy Tenderich, coauthor of Know Your Numbers, Outlive Your Diabetes (www.diabetesmine.com)
“Chronic illness needn’t change your life for the worse if you let Laurie be your guide to everything from doctors to dating to why we sweat the small stuff (because sometimes that’s all we feel we can control). Laurie Edwards is a compassionate confidante, an understanding friend, and a witty chronicler of all things chronic illness, even the not-so-pretty parts. Bravo!”—Susan Milstrey Wells, author of A Delicate Balance: Living Successfully with Chronic Illness
“As a person living with a chronic illness, it is inspiring to hear such a fresh and important voice. Laurie Edwards puts adversity in its place and teaches us to not only go on living, but to create a better life. High five, sister!”—Kris Carr, author of Crazy, Sexy, Cancer
“For those young people suffering from chronic illness, Life Disrupted offers strategy, advice, and hope. For those of us lucky enough to grow up without illness, it tells us how to be respectfully helpful to friends, family, and colleagues in this situation. Superb and engaging writing.”—Paul F. Levy, president and CEO of Beth Israel Deaconess Medical Center, Boston and founder of www.runningahospital.blogspot.com
“A wise and valuable addition to the literature on chronic illness, illuminating with verve and wit the particular struggles faced by young adults. Ms. Edwards is a delightful and seasoned guide. She knows what the issues are, how to decipher them, and how to live a rich life while shuttling between hospitals and high heels.”—Dorothy Wall, author of Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome
“Laurie Edwards is a generous writer who describes with grace and clarity how she has learned to live with multiple chronic conditions. This book is a gift to young people who are navigating chronic illness, school, and their new adulthood all at once.”—Jessie Gruman, author of AfterShock: What to Do When the Doctor Gives You—Or Someone You Love—a Devastating Diagnosis
“Laurie Edwards is a life-enhancing writer. If you’re a person with chronic illness, you should always keep this wonderful book handy.”—Sarah M. Whitman, M.D., psychiatrist specializing in chronic pain management (www.howtocopewith pain.org.)
“Laurie Edwards has written a moving and meaningful description of the issues that people face when they live with unpredictable and debilitating disease. Her words reminded me of my own struggles—and her laughter helped me remember the good times, too.”—Rosalind Joffe, author of Women, Work, and Autoimmune Disease: Keep Working, Girlfriend! and president of Chronic Illness Coach
“Both a practical and a philosophical guide for those navigating this heretofore uncharted territory.”—Lynn Royster, J.D., Ph.D., director of The Chronic Illness Initiative at The School for New Learning at DePaul University
“Life Disrupted is moving and often humorous, as Laurie Edwards informs readers about how they can navigate successfully through the medical storms, live well, and maintain fulfilling relationships.”—Douglas Whynott, author of Giant Bluefin and A Country Practice
“The time for patient empowerment has come and Laurie Edwards’ voice is leading the way. As a fellow lifelong patient, I appreciate her honesty in disclosing private patient moments which reflect the often unspoken truth of living with chronic illness.”—Tiffany Christensen, author of Sick Girl Speaks!: Lessons and Ponderings Along the Road to Acceptance (www.sickgirlspeaks.com)
About the Author
Customer Reviews
Misleading title
Based on the title and the book description, I really thought that this would be a self help book, containing concrete strategies for dealing with chronic illness. However, the chapters read like a series of blog enteries. While the author gives a few vague snippets of advice (of the most obvious nature), essentially this is an autopathography. She mentions other people with chronic illness, but the focus is mostly on her own experience and the experiences of her family. Indeed, her observations are rather narrow and even sheltered as many of the options that were open to her as a seemingly middle class educated woman, are not generally available to others (e.g. taking one job rather than another, being on her husband's health insurance). She does not for example have to deal with the cruel reality of being uninsured. Because of her limited experience, she did not address some key problems, e.g. problems of deformity and mobility or issues of advocacy. For example, her concerns (e.g. the ability to wear high heels) are clearly not concerns that I would value. Thus, even the limited advice that she had to give did not resonate with me. I would have liked this book better had I not been mislead by the title because I do think that there is value in sharing one's experience. However, at this point, I was looking for information and not a life history. Some of the links that she includes at the end of the book were helpful, but I could have found these with google. I was rather disappointed in this book.
A wonderful book for people with chronic illness of ANY age
I've been reading author Laurie Edwards' blog, A Chronic Dose, for quite awhile, so I knew that I'd enjoy her writing style. But with the title suggesting it's for people in their 20s and 30s, I wondered if at 41 I'd find much to identify with.
No question -- I did.
Despite the vast differences in our health situations, I really felt like I recognized myself in Laurie's writing, whether about herself or the people she interviewed.
I'm an insatiable reader, and since I got sick in 2007 with a "mystery illness" that continues to defy diagnosis but has left me mostly housebound and unable to care for my 3.5-year-old daughter, I've read many books on chronic illness. But fewer than a handful stand out as books I'd recommend, and Life Disrupted is at the top of the list.
The reviewer of the Boston Globe called Laurie in a review "the Carrie Bradshaw of chronic illness" and I'm still wondering how the heck s/he came away from Life Disrupted with that comparison. But I do think Laurie is an inspiration to all of us who either have a chronic illness or love someone who has one. She is so honest about the compromises chronic illness forces, but she still manages to do more than so many so-called healthy people can manage.
I don't know if I'll ever be able to manage my life and my illnesses as well as she does, but she gives me something to aim for as well as the hope that someday there will be more to my life than there currently is.
Resounds with multiple audiences
Laurie is someone who is truly living-in the best sense of the word-a life that happens to include chronic illness. I purposely left my copy of Laurie's book on my coffee table when a friend came to stay with me because of a doctor's appointment with a specialist. With only a couple of hours to read before I got home from work, my friend flipped through different chapters selectively. What spoke to her the most from the book was the section that discussed caregivers and the chapter on not being able to make advance plans. My friend is not in her 20s or 30s, but she still feels young enough that she should be able to commit to her work or be able to travel with her spouse. I imagine most people will similarly find some topic in Laurie's book that speaks to them as either a patient, caregiver, relative, or friend of a loved one with a chronic illness. Laurie's book is a reaffirmation that each person's thoughts and emotions are normal, you're a strong person-not a nuisance-if you are your own advocate, and that you can still succeed and have what you desire-even if your definition of success is shaped in some way by illness.
