Review by Lisa Copen, Founder of Rest Ministries
I have read many books on how to cope or live successfully with a chronic illness, and as the founder of National Invisible Chronic Illness Awareness Week, I am eager to read the ones that specifically address the emotions behind an illness, not just the illness facts. Even some of the best books, however, don’t resonate with me in a personal way. And then I read Laurie Edwards “Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties.”
Not only did I discover a gifted writer who discussed everything from humanizing hospitals to difficult diagnoses, but also one understood the emotional roller coaster that I’ve personally been on since being diagnosed with an invisible illness.
I was diagnosed with rheumatoid arthritis at the age of twenty-four, and ironically, I Laurie’s book was published the year that I turned forty. I wish I’d had this book years ago, but the impact the content had on me was not diminished in any way because of my age. I believe I related to the book even more, since I have already experienced so much of what Edwards writes about.
I’ve had an illness through college, dating, marriage and parenting. Through the past sixteen years I’ve trudged my way through all of these without a manual. Although I wouldn’t call Edward’s book a “how to” book, the validation that it provides through her own illness experiences, as well as her professional journalistic look at the sociology behind illness is exceptional.
It provides helpful professional information, with the hint of her diary between the lines. And I found a friend in one who copes with her illness best by burying herself in work. She writes, “As a college student I studied for finals and wrote newspaper articles from the ICU. In graduate school, I taught writing classes so fresh from being discharged that I still had a hospital bracelet on my arm. And all of this seemed perfectly reasonable to me. Why shouldn’t it?” (p. 142).
Edwards, a journalist by trade, is not afraid to put aside her professionalism and “get real” by talking about things that gals with illness can be concerned about, such as not being able to wear “cute shoes” or trying to find the energy to have a conversation with college friends. She even discusses gazing out a hospital window longingly looking at her dorm rooms. These things are a big deal when you are young. Emotionally we learn to live with illness. . . but it’s just so daily!
Edwards reminds us that those daily events of living with illness that can seem so significant are significant and not minor decisions.
- How do we explain our illness when we are dating? When do we reveal it?
- How do we survive the embarrassment of healthcare situations that are a little more intimate than we would like? For example, when the home healthcare professional shows up is a bit too good-looking and close to our age?
- How do we become independent adults who care for our illness when our parents still want to be consulted?
- Is accepting our limitations giving in to our illness?
- How much of a caregiver should we allow our spouse to be?
- Should we have a baby?
Edwards has put together a wonderful book that will not only encourage and validate your emotions, but also inspire you to make positive changes in your own life. Her stories are never depressing (not an easy task for the best of writers) and self-pity is not in her vocabulary. Instead, her ability to laugh at her own circumstances, and share what she has learned on this journey so far, will encourage you, as her enthusiasm and joy for life rings through on ever page.
This is a book I will heartily recommend for years to come to people of all ages.
Note: This is a secular-based book.
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
Laurie Edwards
Walker & Company, 288 pages, paperback
