Enter your mobile number or email address below and we'll send you a link to download the free Kindle App. Then you can start reading Kindle books on your smartphone, tablet, or computer - no Kindle device required.
To get the free app, enter your mobile phone number.
Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties Paperback – June 24, 2008
The Amazon Book Review
Author interviews, book reviews, editors picks, and more. Read it now
Customers who bought this item also bought
Customers who viewed this item also viewed
What other items do customers buy after viewing this item?
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
“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)
Top customer reviews
There was a problem filtering reviews right now. Please try again later.
The book was written by a young lady with a chronic illness. The book teaches you how to cope with other peoples comments, how to cope yourself with being ill and how we beome better at suffering not better patients. It talks about how darn frustrating it can be to try to explain your illness to people and to just try to "ignore" people when they make remarks like "You don't look sick".
This is a not to be put down book. I run the Interstitial Cystitis Support Group for Rhode Island and I wish I had the money to buy 10 copies of them because I would for all of my fellow members!
Thank you to the author! You changed my life! Others with chronic illness's...buy this book NOW!
I recommend this book for anyone facing chronic illness. Importantly, I also think it is the kind of book from which anyone working in healthcare could benefit - and that includes healthcare marketers and communicators. It is important to understand what patients go through, and Laurie certainly shares that with her readers.
Healthcare Marketing as Community Building has been my mantra over the last year or two. I was pleased to see Laurie's many references to "community" while detailing her online activities as an empowered patient (ePatient). Here's a quote from page 80 of Life Disrupted:
"The proliferation of Web forums and discussion boards and medical blogs all speak to our inherent desire to seek out those like us, to affirm the symptoms and aberrations we've finally found a name for, to assimilate into a community when we've felt isolated from the larger world of the healthy for so long."
Her words are profound. I've written blog posts and articles about patients' desire to join in communities of shared interest, but I don't speak with the authority of a patient who has spent a lifetime dealing with chronic disease. Laurie does! And please note, this text was written in 2008. Just think how much has happened online since that time. Patient support communities have come a long way - as has patients' access to health information. On page 79 Laurie discusses her effort to find community online after having received her diagnosis:
"When I was finally diagnosed, it was very important to me to find other people with my problems. Determined to find a community; however remote or far-flung it was, I scoured the Internet looking for PCD and bronchiectasis Web rings and Internet groups. I read all the discussion forums threads in earnest, and even posted now and again. Story after story dealt with misdiagnosis, and our narratives included many of the same details. This is like reading my life story, I thought over and over..."
There are so many additional passages that I would like to share here. In particular, she speaks with authority to the importance of the relationship between the patient and the provider:
"The more patients and health care providers communicate and the more commonalities our modes of language share, the closer we get to more accurate diagnoses and more effective treatment plans." (Life Disrupted, p. 11)
I strongly recommend ordering this book and reading it. Immerse yourself in it. You will be a better marketer, hospital administrator, or clinician because of it.