Adjusting to a diagnosis you do NOT want to adjust to

by Carolyn Thomas    ♥    @HeartSisters

Like many heart patients, I began to notice that my cardiac diagnosis seemed to alter my own best-before date.  It was almost as if I’d been one person for over 50 years before being misdiagnosed and sent home in mid-heart attack, and then one morning (after flying home to the west coast from Ottawa and two more cardiac episodes on that flight)  – I somehow became a completely different person. Once home, I returned to the Emergency Department (and a different Emerg doc) where I was finally correctly diagnosed and treated.  I had presented with the same textbook symptoms that had been misdiagnosed earlier (central chest pain, nausea, sweating and pain down my left arm) – but this time a cardiologist was immediately called in. 

Turns out I wasn’t alone: the late sociology researcher Dr. Kathy Charmaz called this health-related shift in a patient’s emotional state “the loss of self“.    

For most of us, this strange new state of adjustment is temporary. Temporary, but scary.   

Because heart disease is an invisible condition, I still looked the same and sounded the same after being discharged from the CCU (the intensive care unit for heart patients) but I knew that something weird was happening to me.

This weird part seemed freakishly separate from the ongoing physical symptoms of refractory angina  – which I live with to this day, 16 years after my heart attack and subsequent secondary diagnosis of coronary microvascular disease (MVD).  

Around the time of that second (corrected) diagnosis, I met a woman in the hospital who had also been diagnosed with MVD a decade before me.  Until then, I’d never met another person living with this common but under-diagnosed condition affecting the smallest coronary arteries feeding the heart muscle. She was one of those funny, big-personality women who laugh easily and often. I felt both inspiration (maybe I too might actually survive another 10 years despite this new diagnosis?) and complete despair ( how can I possibly stand living in pain like this for 10 more years!?)

I did learn how to generally manage my physical symptoms over time, but I struggled to manage this “loss of self”.  Some days, it felt like I could barely recognize the new person I’d become.

Here’s how Dr. Charmaz first described the loss of self in her 1995 publication “The Body, Identity and Self”.  She pointed to the narrow medicalized view of suffering – defined by a medical profession that often views illness specifically  as a range of physical symptoms.  She believed that this definition ignores or minimizes the broader significance of suffering in a way that may resonate with you if you too live with a chronic and progressive  illness like heart disease:    

“A fundamental form of that suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones. The experiences and meanings upon which these ill persons had built former positive self-images are no longer available to them.”

I could identify with her words back then, and especially her theory about adapting to illness over time. This is not, by the way, about throwing up your hands in despair and giving up following a serious diagnosis. It’s about developing newer self-images to replace our “crumbling away” former ones, as she explained:

“Serious chronic illness undermines the unity between body and self, and forces identity changes. Adapting means altering life and self to accommodate to bodily losses and limits, and resolving the lost unity between body and self.

“It means struggling with rather than against illness. The process of adapting consists of three major stages:

1. experiencing and defining impairment

2. making bodily assessments and, subsequently, identity trade-offs as ill people weigh their losses and gains – and revise their identity goals

3. surrendering to the sick self by relinquishing control over illness and by flowing with the experience of it

But when I first read her list of this adapting process, I was gobsmacked. I’m supposed to “relinquish control” over my diagnosis and just “flow with the experience”?  My initial gut reaction to her words was something like:  

“Oh, really? Have YOU ever survived a widow-maker heart attack?!?”

But Dr. Charmaz went on to explain that adapting to a serious medical condition isn’t a one-shot deal:

“Adapting seldom occurs only once. Rather, chronically ill people are forced to adapt repeatedly as they experience changes or new losses.”

Australian researchers Dr. Louise Sharpe and Dr. Leah Curran also remind us that it’s this ability to adapt that can actually help us emotionally in coping with these changes in life.(1)

They explain that “a considerable number of patients who experience even the most devastating of illnesses seem able to adjust to illness without experiencing clinically significant psychological problems.” 

Learning to adjust to your diagnosis, they write,  is a process that begins with the first symptoms, and continues throughout the course of the illness, responding to subtle or severe changes throughout that illness.

Learning to look at a chronic medical condition as a “process” is, I now believe, what helped me.  It certainly helped as I was diagnosed with painful osteoarthritis a few years ago (which turned out, amazingly, to matter more to my day-to-day life than my cardiac symptoms did). See also: When heart disease isn’t your biggest problem

In response to those first excruciating arthritis symptoms, for example, I did find helpful support in, among others: 

• the Arthritis Society’s 2-day classes for new patients
  
• the orthopedic surgeon whose first recommendation was a high-tech knee brace (instead of the knee surgery I’d feared)
• the Hand Clinic physiotherapists who treated my painful finger and wrist joints and fitted me for a skookum wrist brace so I can now safely pick up a cup of coffee

I also decided to take my own advice. I have always suggested to my Heart-Smart Women presentation audiences and to my Heart Sisters readers who are going through a new and scary cardiac diagnosis:

“Your only job right now is to become the world expert in your condition!”

I’m no world expert in osteoarthritis yet, but I now know where to find that expertise. Knowledge is power. And I do pay attention to what those experts advise me to do to reduce (and even prevent) painful symptoms (e.g. walking every day, religiously doing my finger and hand exercises, wearing my wrist and knee braces, daily stretching, etc.)

And like many of you, I spend a little over one hour a year at this point following up with my cardiologist, but 8,759 hours the rest of the year figuring it out myself. I’m no world expert in my cardiac conditions, of course –  but I’m pretty darned close AND I don’t hesitate to ask for help when I need to.

What I’ve learned is that sometimes our painful physical symptoms are not the worst part of a bad news diagnosis. The ability of painful symptoms to change our personality can feel far worse. The Sharpe and Curran research helped me to understand that the emotional response in coping with these changes is as or more important than my physical symptoms.

1. Louise Sharpe, Leah Curran, “Understanding the Process of Adjustment to Illness, Social Science & Medicine, Volume 62, Issue 5, 2006. Pages 1153-1166.

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Flower image: BiancaVanDijk, Pixabay

Thanks to Irish health activist Marie Ennis-O’Connor (who blogs at Journeying Beyond Breast Cancer) for introducing me to the Charmaz study.

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Q:  What has helped or hurt your own adjustment to a bad news diagnosis? 

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NOTE FROM CAROLYN:   I wrote more about adjusting to a frightening medical diagnosis in my book A Woman’s Guide to Living With Heart Disease  (Johns Hopkins University Press).  You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (use their code HTWN to save 30% off the list price).

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