Books Chronic Illness epatient Good Books Patient Empowerment

Life Disrupted: Getting Real About Chronic Illness

Screen Shot 2014-02-20 at 1.07.39 PMAbout a week ago I wrote a post about two books I recently purchased – both written by Laurie Edwards. Last week when I was flying to and from client meetings, I had time to read the first of the books: Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties. This is a really good book. I like Laurie’s writing style. It was easy to read, even though the topic can be difficult.

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 experience 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. You will be a better marketer, hospital administrator, or clinician because of it.

4 comments on “Life Disrupted: Getting Real About Chronic Illness

  1. Great post Dan, looking forward to picking up the book

    -Vanessa

    • Thanks Vanessa. The book is not fun to read, but important to read. Take care,
      Dan

  2. Pingback: My Amazon Reading List for Healthcare Communicators | The Healthcare Marketer

  3. Pingback: A Day Dedicated to ePatients | The Healthcare Marketer

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