When California sociologist Dr. Kathy Charmaz studied the subject of suffering among those living with chronic illness, she identified an element of suffering that is often overlooked by health care providers.(1) As she explained her findings:
” 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.”
Dr. Charmaz also found that this profound sense of having lost the “self” you used to be before being diagnosed is generally the result of both external and internal influences on how we view ourselves.
As an example of internal factors that can affect our loss of self, Dr. Charmaz points to a heart patient in her study who had always loved to travel before surviving her cardiac event.
“But afterwards, she decided to stop traveling because she thought it unwise to be too far away from her doctors.
“She then decided to stop driving in order to reduce stress except for occasional short errands.
“She decided that her dog was too much trouble, so she did not replace him after he died.
“Although these self-imposed decisions to simplify her life were made to accommodate ongoing symptoms, she did so at the cost of increased isolation.
“And according to her son, she ‘subsequently focused more intensely on each potential symptom.'”
The internet is the place where patients are making diagnoses, creating effective health education materials, and finding the peer support that is critical for their survival.”)
“Women with heart disease who complete a 12-week cardiac rehabilitation program are two-thirds less likely to die compared to those who were NOT referred to the program. And the mortality benefits of this evidence-based program in patients with angina, or for those recovering from heart attack, coronary artery bypass graft or implanted stents appear to be even more striking in women than in men with the same condition.”
Or, as Oregon cardiologist Dr. James Beckerman bluntly warns his colleagues who fail to prescribe cardiac rehab for all eligible heart patients:
“It is bad medicine to withhold life-saving treatments.”
The worst part of what happens to patients whose sense of self is hurt by these external influences is the direct impact on their future health.
Heart patients can remain stuck in the scary myth that what a wounded heart needs is rest after a cardiac event. Most of us already feel understandably frightened by every little twinge or bubble after we’re discharged from hospital. Taking it easy, lying down, going slow, hardly moving a muscle – these all seem to make sense to an overwhelmed cardiac survivor in the beginning of recovery.
But as cardiac rehab classes demonstrate, we soon learn that the opposite is almost always true: a wounded heart needs work, NOT rest to recover.
So a doctor’s failure to refer patients to cardiac rehab acts as an external influence that can seriously impact both the loss of self and the risk of worsening symptoms/poor outcomes.
And as Mayo Clinic cardiologist and founder of the Mayo Women’s Heart Clinic Dr. Sharonne Hayes urges all heart patients:
” If you are referred for cardiac rehabilitation, go!
“If you aren’t referred for cardiac rehabilitation, ask.
“If you ask and your doctor refuses to refer you, it’s time to get a new cardiologist.”
Meanwhile, the lived experience of a chronic illness diagnosis can, paradoxically, evolve both slowly and rapidly, as Dr. Charmaz explains in her book, Good Days, Bad Days: The Self in Chronic Illness and Time:
” A once-calm day with a smooth schedule or a taken-for-granted routine now teeters with ups and downs. A ‘good day’ permits an even schedule and is savored. A ‘bad day’ forces attending to immediate needs and may be dreaded. Good days and bad days lend new meanings to the present and future, and shade memories of the past.”
But having a chronic illness means far more than just learning to live with it, adds Dr. Charmaz. Illness forces us to lower our own expectations of self – at least for a while. Yet doing so can still shock and unsettle us.
A person who lives with chronic illness also faces many questions over time. For example:
- What does it mean to have a serious chronic illness?
- How does the illness affect my sense of ‘self’?
- How do I make sense of time-outs for illness, slowed time for symptoms, added time for treatment regimens, and crisis time?
- What mirrors of ‘self’ does illness provide?
- When do I resist accepting the images mirrored in illness, and when do I accept them?
Dr. Charmaz adds that, along with these questions, there remains a subtle opportunity to modify the answers over time:
” Priorities change, and along with them, perspectives. What began as an alien reality, after months or years, may come to feel natural, inalienable – right. What once may have devastated someone can become a path to developing competence and compassion.”
(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 more about becoming a heart patient in my book “A Woman’s Guide to Living with Heart Disease“. 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).
Q: Have you identified either internal or external ways that your own sense of self has been impacted by your diagnosis?