Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties [Paperback]

Laurie Edwards (Author)

Book Description

Release date: June 24, 2008

An inspiring guide to staying in control of your health care, your life, and your dreams despite having chronic illness, by a popular journalist and award-winning blogger.
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.

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)

See all Editorial Reviews

Product Details

• Paperback: 272 pages
• Publisher: Walker & Company; First Edition edition (June 24, 2008)
• Language: English
• ISBN-10: 0802716490
• ISBN-13: 978-0802716491
• Product Dimensions: 7.8 x 5.6 x 0.8 inches
• Shipping Weight: 10.4 ounces (View shipping rates and policies)
• Average Customer Review: 4.5 out of 5 stars  See all reviews (27 customer reviews)
• Amazon Best Sellers Rank: #138,082 in Books (See Top 100 in Books)

More About the Author

Laurie Edwards is an award-winning health writer and patient advocate. Her newest book, In the Kingdom of the Sick: A Social History of Chronic Illness in America (Walker, 2013), explores patient rights, the role of social media in medical advocacy, the origins of our attitudes about chronic illness, and much more.

People with chronic illness owe much to advances in medical technology, but they also are aware both of the limits of science and of society's throwback belief--subtle or blatant--that people who are sick have weaker character than those who are well. Through research and patient narratives, Edwards looks at the origins of these attitudes, and from the advent of modern vaccinations through present day, she traces the experience of being a patient with chronic illness through such cultural influences as the disability rights movement, the women's health movement, and the rise of the Internet and health 2.0 technologies.

Critics call In the Kingdom of the Sick "surprising, revealing, and beautifully written," and a "probing, clear-thinking examination of the new medical crisis on our hands: chronic illness." In giving it a starred review, Booklist described it as "an indispensable book for anyone with or concerned about chronic disease, and everyone interested in the health professions."

Edwards is also the author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties (Walker, 2008), the first book to focus on and advocate for the needs of younger adults with chronic illness--a population that continues to grow. Life Disrupted was named one of 2008's Best Consumer Health Books by Library Journal, and Publisher's Weekly called Edwards "wise, generous, and a terrific storyteller."

Edwards is a freelance writer and writing consultant whose work has appeared in the Boston Globe, Boston Globe Magazine, Glamour, and many online and print outlets. Her award-winning health blog, A Chronic Dose, was featured in Wired. As an advocate for young adults with chronic illness, Edwards is a frequent speaker at conferences, virtual conferences, webinars, and other venues. In 2009, she was invited to participate in a private, round-table discussion about health care with President Bill Clinton at the Clinton Foundation.

Edwards received a Bachelor of Arts from Georgetown University, and a Master of Fine Arts from Emerson College, where she won the departmental award for nonfiction writing. She is a full-time lecturer at Northeastern University, where she teaches writing for the health sciences. She lives with her family outside of Boston, Massachusetts.

Most Helpful Customer Reviews

60 of 65 people found the following review helpful

2.0 out of 5 stars Misleading title October 27, 2008

By Kalavinka

Format:Paperback|Amazon Verified Purchase

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.

18 of 19 people found the following review helpful

5.0 out of 5 stars A wonderful book for people with chronic illness of ANY age July 22, 2008

By Aviva Brandt

Format:Paperback

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.

15 of 18 people found the following review helpful

5.0 out of 5 stars Resounds with multiple audiences June 24, 2008

By Audrey

Format:Paperback

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.