by Carolyn Thomas ♥ @HeartSisters
“You must go on. I can’t go on. I’ll go on!” These words are from Irish author Samuel Beckett’s 1953 novel, The Unnamable”. The late Nobel Prize winner was describing a reaction that many patients may find familiar, especially when facing the shock of a new medical diagnosis on top of your existing condition.
I wrote here about how overwhelmed I felt as a heart patient (“I can’t go on!”) with distressing new joint pain, and a diagnosis of osteoarthritis. It was too much! I simply couldn’t bear yet another painful diagnosis piled onto my already debilitating daily symptoms of a coronary microvascular disease diagnosis!
But an amazing thing happened.
First, my family doctor encouraged me (“You must go on!”) – suggesting I sign up for free online classes at our local Arthritis Society (hosted by people who know far more about this diagnosis than I’d ever been interested in learning until now). She also arranged an in-person consultation with an orthopedic surgeon, whose recommendation was NOT for surgery (which I’d been dreading) but first for what’s called an unloader knee brace to help improve my mobility and thus ease my symptoms.
Moving a painful body part may seem instinctively counter-intuitive. Couldn’t I just stretch out here on my red recliner with my pillows and blankies, my painful left knee propped up with ice packs? But what I learned is that “motion is lotion”. The surgeon, for example, urged: “Let’s see if a good brace can get you back to your walking group!” I was fitted for a skookum knee brace by his physiotherapist colleagues who specialize in fitting such stabilizing braces.
And, to my great relief and surprise, I was ultimately able to rejoin my walking group (“I’ll go on!”) The brace helped me do this safely and with far less discomfort as the muscles around my affected knee joint grew stronger. I may require knee surgery at some point, but I’ll cross that bridge later.
Every time a person already living with one or more chronic illnesses learns they have yet another medical diagnosis, it can feel far bigger than simply the new diagnosis itself. Researcher Dr. Kathy Charmaz calls this phenomenon the loss of self that can accompany a life-altering diagnosis – a loss experienced while we’re learning to adapt and adjust, as she describes:
“A fundamental form of 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.”
How we talk about this loss can have an impact on how we get through it, and how we get through it has likely been impacted long ago during our childhood.
Coping with loss or adversity in the past, and more importantly, how our own families coped when we were growing up can influence how we approach crisis and setbacks now. Behaviour scientists, like Dr. Sonja Lyubomirsky at the University of California Riverside, for example, assure us with these surprising findings:(1)
“Life’s turning points do not have to become major crises after all. In fact, our research has found that life events do not have much of an impact on optimism or happiness.
“And as crazy as this might seem, I recognize one true thing: the older we get (except maybe for extreme old age), the better the chances of being able to handle any given catastrophe, entirely due to all those years of experience in successfully handling all kinds of difficult problems, big and small.”
As one of my wise Heart Sisters blog readers reassured me after I wrote about how distressed I felt about my surprisingly debilitating new joint pain:
“I know you will put your efforts into figuring this out – just like you did with the cardiac issues!
She was right. I’ve been through more than one severe medical crisis before. More importantly, my own background and family narrative reinforced in me the idea that no matter what’s happening right now, we’ve been able to cope with far worse over the years.
Psychologists Drs. Marshall Duke and Robyn Fivush at Emory University summarize three common forms of this family story-telling(1):
- Ascending family narrative (things always got better for us)
- Descending family narrative (things always got worse for us)
- Oscillating family narrative (we’ve been up. We’ve been down. We’ve had terrible, painful times but we got through them. We’ve also enjoyed the best of times, but when they didn’t last, we survived no matter what. This third form of narrative is associated with “increased resilience, better adjustment, and improved chances of good clinical and educational outcomes.”)
Dr. Duke added:
“In our study of family stories at the Emory University Family Narratives Project, we found that family stories seem to be transferred by mothers and grandmothers more often than not, and that the information is typically passed during family dinners, holidays and celebrations.”
We know that hearing stories about our family’s past adversity can affect a child’s interpretation of what painful setbacks, disappointments or family crises mean.
For example, are these viewed as unfair tragedies that happen to others, but should never happen to us? Or are they seen as predictable facets of life that we will somehow find a way to adapt to?
Denial, for example, is a known and predictable response to bad news. We are overwhelmed. We can’t believe what’s happening. And we don’t want this to be happening. Denial of a scary new diagnosis in the earliest days may even be considered self-protective, according to Mayo Clinic experts:
“After a traumatic event has occurred, you might need several days or weeks to fully process what has happened and come to grips with the challenges ahead.
“This type of denial can be a helpful response to stressful information. You initially deny the distressing problem. As your mind absorbs it, however, you can come to approach it more rationally over time.”
It’s apparently when we first hear the diagnosis that patients like me are likely to experience the most disruptive emotional upheaval.
The late Dr. Hans Selye was a Canadian physiologist whose studies on stress have guided the modern era of stress research. He suggested that this stage of disruption follows the first profound shock of uncertainty as we try to get our brains wrapped around what’s just happened to us.(2) His explanation of this second stage:
“Now the person is on high gain, accustomed to the increased flow of adrenaline, consciously appraising what has previously been grasped automatically. For example, at this point the person knows that something bad has happened, although the person may also be thinking: ‘This can’t be happening to me!’ There is loss. There is pain. And then reality sinks in, and eventually, there is a return to some equilibrium in the body, the mind and the community.”
1. S. Lyubomirsky, “The Science of Happiness,” lecture at Pepperdine University, Seaver College, W. David Baird Distinguished Lecture Series, Malibu, California, September 25, 2014.
2. H Selye, “The General Adaptation Syndrome and the Diseases of Adaptation”. The Journal of Clinical Endocrinology & Metabolism, Volume 6, Issue 2, 1 February 1946, Pages 117–230.
Image: Arayro, Pixabay
Q: Have you experienced a new medical diagnosis you did NOT see coming?
♥
NOTE FROM CAROLYN: I wrote about the experience of becoming a patient (sometimes more than once!) in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop, 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).