Friday, 8 March 2013

Life Disrupted: Getting Real About Chronic Illness in Your Twenties andThirties (Laurie Edwards)

Life Disrupted was the first book on the #spooniebookclub reading list, and an excellent choice!
Laurie Edwards takes you through the things that matter to young people with chronic illness, and the experiences that define being young and living with chronic illness. As an author, she is a great role model - she not only works, but has created work for herself using her experience. In a culture where you are either healthy and working or sick and not working, Edward's story is a breath of fresh air and a welcome reminder that it is possible to be ill and employed!

Her short chapters make the standard late night reading 'oh just one more chapter' even more tempting, but also provide digestible snippets on each idea. It isn't a novel, and doesn't read like one, yet it doesn't feel like reading a reference book either - I breezed through it, turning each page to see a reflection of myself and my experience.
There were several big differences between our experiences of chronic illness. Firstly, the contrasts between the healthcare systems each sides of the Atlantic. Both have their faults and Edwards laid bare the financial implications of chronic illness. But I couldn't help feeling envious of the contact and control she seemed to have with her doctors - unheard of over here!

Secondly, although she talked about stays as an inpatient and an outpatient, I couldn't help feeling that she missed one of the biggest challenges of chronic illness - when you are ill but rarely have to go to hospital because the condition doesn't cause 'crisis'. In chapter 26 (The Maintenance Mode Myth, crisis are difficult, but so is adjusting to "normal" life without them) she did touch on it, but I would have loved to read more about this. I fully appreciate the challenges that such an extreme and fluctuating condition can have. But the hardest thing I find with my conditions which are not critical but have quite debilitating symptoms, is that no-one really notices because you are not critically ill, and don't go to hospital, yet the day to day quality of life is poor because you feel quite unwell all the time. Although, as I read further through the book, Edwards responded to my thoughts with this:
"All these differences speak to even more compelling commonalities."
I have often found the overlap between different experiences the most powerful and comforting aspects of sharing stories - I guess that is what we should focus on when talking cross conditions, rather than comparing hospitalization rates? Edwards then went on to say:
"Our responses and adaptations to illness are as different as our physical symptoms and treatment plans are, but universal themes of acceptance, identity, and survival are independent of disease category and pathology."

The issue of language and perspectives came up and Edwards very eloquently described the stark differences between patients and healthcare professionals, and really hit the nail on the head!
"Disease is the stuff of laboratories, specimens and procedures - the result of diagnostic inquiries and tests. Illness refers to the actual experience of living with conditions, and unlike the language of disease  this is a vocabulary that belongs to the patient. Rather than numbers or quantities, it concerns emotions and perceptions."

"I wanted information stripped of medical jargon and technicalities. I'd spent twenty-odd years conversing in that language, and it had never once captured my experiences with illness."
We often talk about lay language, but these quotes show the dramatic differences in the effectiveness of language for different people. If the language we have only explains the medical stuff, then how can we talk about and explain experiences and emotions?

Feeling kicked around?
I gave a talk yesterday at a conference about integrated care are referred to the concept of teams, and talked about the role of captain being taken by patients. Edwards explains here the reality of integrated care for many patients, including myself, using the team analogy:
"In hospital speak, you aren't a member of your medical team so much as you are the human football."

I am sure the issue of appearance bothers chronically ill patients of all ages, but I the impact of my conditions on my appearance acutely. I am grateful that Edwards covered it in several chapters, particularly chapter 25 (Sick Chic: being sick and being stylish are not mutually exclusive). The issue of appearance leads me onto the dichotomies that are an inevitable part of life with chronic illness:
 "Its when I am not in obvious patient mode that I feel a push and pull between looking healthy and feeling terrible."
She explained so well the dichotomies of life with chronic illness. I have daily battles with myself mentally about what I should and shouldn't be doing, and find it really draining. Edwards expressed so articulately some of those:
"...huge difference between simply acknowledging limitations caused by health conditions and actually responding to them in a productive way."
"If you get too bogged down in worrying about the future, it's  difficult to enjoy the present; yet if you're too casual about managing the disease now, your health will be that much more affected later in life."
"I didn't ever want to become a martyr for my illnesses, nor did I want them to affect the balance of give and take that exists in any good relationship."

Overall, a reassuring read for anybody with chronic illness, and something I would love to see part of medical school reading lists! Edwards very effectively gets to the heart of the experience of chronic illness, as long as you can ignore the idiosyncrasies of the American healthcare system! Thank you to my #spooniebookclub friends for recommending it!

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