by Carolyn Thomas ♥ @HeartSisters
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:
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” 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?
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See also:
The loss of self in chronic illness is what really hurts
The new country called heart disease
Living with heart disease – and your whole family
Listen up, ladies: 16 things I’ve been meaning to tell you
Are you a victim or a survivor?
When grief morphs into depression
Hypervigilance: waiting for that second heart attack
Heart Sisters 
I’ve been dealing with chronic illness (CFS) with no help for so long (27+ years) that I’m an old pro at it. I didn’t need the additional cardiac stuff – but it stands to reason, since I can’t exercise, can’t walk properly after failed back surgery in 2006, and barely making it through the day.
But this has added a huge amount of new stuff to deal with, and I’m not minimizing any of it. Instead, I’ve been writing about it every time I figure out a piece.
And reading research articles carefully, to see what they say and what they DON’T say about all kinds of cardiac results and meds. I’m appalled at some of the ‘research’ results as given in papers.
Did not need this – but I have it. I guess I’ll learn to deal, as we all do. I’m used to going it alone for most of it.
And I dumped the first rehab guy – and will do the closer, better-hours program I insisted on investigating. And will be my own advocate for the CFS issues which will arise – probably in direct opposition to the ‘standard protocols’ the PT people have. We’ll see. But I’m doing it. In fact, when all this happened, I was trying to get fitter – with the CFS protocol version.
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Excellent post Carolyn. Once again you made me stop and think.
The loss of self is fascinating. Through life we all chronically lose ourselves and are largely unaware. A heart attack or other acute incidences don’t allow for gradual adjustment and are like tsunamis (rather than constant waves eroding our beach-heads.)
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Hello Judy-Judith! Nice to hear from you. You bring up such an important point: gradual vs unexpected conditions that impact this loss of the former ‘self’ as we knew it. (Love that tsunami vs constant waves analogy of yours!)
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Carolyn, this article is particularly timely for me. I have lived with heart disease for years. I had to “retire” from my profession in 1998 and deal with the sudden isolation I experienced then. After many years, 2 surgeries, many medications, and occasional hospitalizations I thought I had my restricted life figured out, as long as I took all my meds and kept my INR, my K and my fluid balance within a narrow range (!)
Two months ago I got a virus that was going around and when the main symptoms were gone, I was still exhausted. Following a month of exhaustion, I had such severe Shortness Of Breath that I went to Emergency. After four hours in bed the SOB subsided. The first Resident who saw me in Emerg questioned me thoroughly, explaining to me that heart attacks in women often present with symptoms we don’t ordinarily associate with hearts or heart attacks. (Yes!) Besides chest pain, he wanted to know about indigestion. Come to think of it, I’d had chest pain 3 or 4 times in the last month or so, in the night.
I was admitted to a cardiac unit. Over the next week I had many basic and several extremely sophisticated, and I imagine expensive, tests. I did not have a heart attack. The tests were negative for heart muscle impairment, infection, valve (2 artificial) malfunction, or heart vessel blockage.
By the end of the week I was having severe irregular epigastric pain at rest, while taking slow-release nitroglycerin pills. That continues. Sub-lingual Nitroglycerin spray every 5min x 3 relieves the pain for at least a few minutes, while it causes a bad headache and lowers blood pressure.
The thinking is that I now have Prinzmetal angina (spasms of coronary arteries of unknown origin). It does not explain the initial severe SOB or my current SOB with very little walking.
So… who am I now? Someone who has a good grasp of her condition and can mostly control her symptoms, albeit with a restricted life? Someone who has to take her her nitro pill at the same time every day and have her Nitro spray within reach and is otherwise ‘as usual’? Someone who is doing everything she’s supposed to do and despite superb medical care and excellent communication with the specialist medical community is afraid of what’s going to happen next?
Uh, Yes. That’s a tough one for me.
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A very eloquent and moving comment, Jenn. I’m so sorry that, just when you thought you had this chronic illness thing figured out, that nasty virus hit and a subsequent new improved cardiac diagnosis! Damn!!! Prinzmetal’s can indeed be tricky to diagnose and treat effectively. I wish you the best of luck in adapting and adjusting to this new challenge – much as you were able to do back in 1998 with your first diagnosis.
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Carolyn,
As a SCAD survivor, while it has been difficult losing my former self (and getting used to my “new normal”), the hardest part for me has been taking back control from others and becoming my own person again. I was always the one in control, taking care of everyone else and for the first time that I ever remember, I had to rely on others for quite some time. It has been an ongoing challenge to get it back and be me.
–Deb
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That is quite a role reversal you’ve been experiencing, Deb – especially with a diagnosis of Spontaneous Coronary Artery Dissection that so often strikes young healthy women with few if any cardiac risk factors, the ones who honestly do not see it coming. Your whole identity must have felt rocked.
Something to consider: it may not be necessarily a bad thing to relinquish that sense you need to always be the one in charge. You’ve just had a valuable lesson in realizing that you deserve to be the one taken care of sometimes. Best of luck to you…
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This article will be shared with everyone I know because many are either living with heart disease or know someone who is. Support groups and rehab are most important in recovery. I know. I had them both.
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Thanks for sharing this with your friends/family, Ree. I agree with you re support groups (either in person or online) and cardiac rehab; I believe that instructions for these two should be pre-printed on every cardiologist’s prescription pad!
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