People living with chronic illness already know that the triple whammy of ongoing physical symptoms, psychological distress and the discomfort of medical procedures can cause us to suffer. But when California sociologist Dr. Kathy Charmaz studied chronic illness, she identified an element of suffering that is often dismissed by health care providers.(1)
As she explained in research published in the journal Sociology of Health & Illness, a narrow medicalized view of suffering that’s defined as physical symptoms only ignores or minimizes the broader significance of suffering in a way that may resonate with you if you too live with a chronic 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 don’t know about you, my heart sisters, but I felt profoundly moved when I first read those words about “the loss of self”.
Dr. Charmaz, also the author of the book Good Days, Bad Days: The Self and Chronic Illness in Time, captured in her study’s conclusion precisely what I’ve been feeling and trying to write about since my own heart attack in 2008.
This loss of self she describes can start early – sometimes even before a diagnosis is made – and continues to grow insidiously from there.
- Pre-diagnosis: Physicians can discredit our own definitions of self when we’re seeking help for early troubling symptoms (e.g. when we try to convince a dismissive doctor: “I know my body, and something is just not right!”) Dr. Charmaz warns that physicians sometimes treat undiagnosed persons “as neurotics whose symptoms are either nonexistent or psychosomatic in origin, leaving the patients feeling unsupported or guilty of having brought their discomfort upon themselves.” See also: Heart Attack Misdiagnosis in Women
- Beginning of illness: “Generally, ill persons report that family and friends may readily demonstrate their interest, attentiveness and assistance when illness begins, but as time goes by such involvement tends to dwindle to only few members of the immediate family.” See also: Living With Heart Disease – and Your Whole Family
- Worry about burdening others: Although some married women in the study reported that their husbands were “exceedingly helpful, supportive and protective”, several married women expressed fear of greater impairment since their husbands “did not like sick people”. See also: Women Heart Attack Survivors Know Their Place
- Unpredictability: The nature of living with a chronic illness means sometimes we just can’t predict when we might have a ‘good day’ or a ‘bad day’ – or even intermittent ‘bad spells’ during any given day. “Due to their unpredictable conditions, these patients suffer disruptions of their lives and selves that go far beyond physical discomfort. Such disruptions may include the necessity of quitting work, limiting social engagements, or avoiding activity.” See also: How Social Isolation is Hurting Your Heart
- Limitation of life: When people are forced into limiting normal activities to protect their health, adds Dr. Charmaz, they may do so at great costs to one’s self-image. “Most importantly, living a restricted life can foster an all-consuming retreat into illness.” See also: The New Country Called Heart Disease
- Work: Some chronically ill people feel well enough to continue working, while others are no longer able to work – but coping with either decision can affect our sense of self, as Dr. Charmaz explains: “When fortunate enough to work, ill persons frequently feel they have to restrict all other activities in order to manage the demands of their jobs. But when forced to leave work, they may be reduced to living marginally, leaving their prior social worlds entirely.” See also: How Working – And Not Working – Affects Heart Disease
- All-consuming focus: Serious illness can flood identity. The seriously ill person may have essentially lost the ability to minimize his or her physical condition, explains Dr. Charmaz. “Their illnesses become the focus of their lives as treatment regimens, living with constant discomfort, medical appointments, and the problematics of mundane activities structure and fill their days.” See also: How Ruminating Hurts Your Heart
The world is set up for the healthy and able, she adds – a fact the ill and disabled usually do not question. She believes that this reality may help to explain why the patients she studied (living with a range of chronic illnesses including cardiovascular disease, diabetes, cancer, multiple sclerosis or lupus) so often judge themselves by yardsticks more appropriately applied to the healthy and able.
One of the most useful parts of this study is the expansion of the word “suffering” to include a loss of self. As Dr. Charmaz defines it:
“The language of suffering these debilitated people spoke was a language of loss. They seldom talked of gaining a heightened consciousness of the world, revelations about self or insights into human nature from their experiences. Instead in their suffering, they experienced the heightened self-concern described above.”
But wait . . .
Lest you interrupt at about this point to mention ________ (insert name of any celebrity patient who has “battled” a devastating health crisis and emerged a happier, stronger, far more heroic version of their former selves), Dr. Charmaz is careful to point out the key differences. See also: “We Are All Patients.” No, You’re Not.
On one hand, you have those who are still living with the debilitating daily reality of chronic illness. These are not the same at all as those who at one time in the past may have had an episode of serious acute illness – but then got better:
“For (the latter group), such periods of serious illness became the foundation for re-evaluation and change of self.
“These individuals spoke of earlier crises as periods of time when they were free from the ordinary bonds of routine existence. That freedom heightened their consciousness of who they were and who they wished to become.
“For these people, illness became a tool of self-discovery and a fundamental source of later self-development.
“But those who were currently seriously debilitated and still in the throes of multiple health crises, were much less positive about their experience of illness.”
All is not necessarily bleak, however, for all those living with chronic illness. For example, retaining the ability to make personal choices (no matter how small) goes a long way in rebuilding that sense of self. I was particularly struck by this observation about the power of choice from Dr. Charmaz:
“As long as an individual feels that he or she exercises choice in valued activities and some freedom of action to pursue these choices, everyday life does not seem so restrictive, suffering is reduced, and self-images are maintained.”
This really helps to explain why I love doing my women’s heart health presentations so much. These have been described as “part cardiology bootcamp – and part stand-up comedy!”
Since my own heart attack, I’ve spoken to thousands of women – and quite a few men! – about the important subject of women’s heart health. Yet each talk takes a heavy personal toll, sucking every shred of energy I can muster. I’m utterly drained by the time I step off the stage, and more importantly, I need at least one full day afterwards immobilized on the couch just to recover. But I love every single minute while I’m up there, so to me it’s worth the price – for now, or as long as I’m able to continue.
It would certainly be easier and less painful for me to avoid this exhaustion by not booking any talks in the first place – but I choose to continue doing them. For that time when I’m onstage, as Dr. Charmaz would say, I get to see glimpses of my old pre-diagnosis self. I can feel even briefly like a smart and competent and “normal” person once again. This means a lot to me given that so much of life with ongoing and debilitating cardiac issues no longer feels “normal” at all.
Or as Dr. Charmaz would define it, although much of my former self-image has “crumbled” away, I’m now trying to manage this “simultaneous development of an equally valued new one.”
When a friend’s niece (a busy, active, accomplished healthcare professional) was diagnosed with terminal brain cancer last year, she shocked her family and friends by planning a big family trip to Europe before she died. Why, they worried, would she want to put herself through all that stress (far from safety, familiar surroundings and her medical team) instead of staying home and resting? Perhaps, as Dr. Charmaz’s study suggests, it was important to her to keep making those “choices in valued activities” for as long as she could.
The newly emerging self-image is probably unlikely to be better, or even as good as, the old version. And remember that the old version, thanks to the rosy glow of idealism, can loom larger and more *perfect* with each passing day compared to our current reality.
It may not matter. For now, I know that even a small step forward keeps me from staying stuck in regret, resentment and the utter futility of wishing that what happened had never happened.
(1) Kathy Charmaz. Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health & Illness. 28 JUN 2008. DOI: 10.1111/1467-9566.ep10491512
Thanks to Irish health activist Marie Ennis-O’Connor (who blogs at Journeying Beyond Breast Cancer) for pointing me to the Charmaz study.
NOTE FROM CAROLYN: I wrote much more about adjusting to life with a chronic illness 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 the code HTWN to save 20% off the list price).
Q: How have you tried to maintain your pre-diagnosis self-image?