The “loss of self” in chronic illness is what really hurts

~ Carolyn Thomas

by Carolyn Thomas  ♥   @HeartSisters

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.

For example:

  •  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.

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(1) Kathy Charmaz. “Loss of self: a fundamental form of suffering in the chronically ill.” Sociology of Health & Illness. 28 JUN 2008.

♥

 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 30% off the list price).

 

Q:  How have you tried to maintain your pre-diagnosis self-image?

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See also:

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

Living with the “burden of treatment”

How to be a “good” patient

Published by Carolyn Thomas

23 thoughts on “The “loss of self” in chronic illness is what really hurts”

  1. Thank You!!! And yes, you hit the nail on the head.

    I did not have a heart attack, but I was diagnosed with coronary microvascular heart disease and refractory angina last year. The first symptoms started in 2011, specialists thought for sure I had a blocked artery but nope, all clear. Said something about the small vessels, nothing can be done, eat right, exercise, you will be fine.

    2018 everything went sideways, and then was diagnosed. Since the Spring of 2018 my life has changed sooooo much! I can’t do very much anymore because physical exertion sets off the angina big time, which can last all day. And this happens to me all the freaking time. I am no longer working at my beloved job, my social circle has diminished, and when I am doing stuff I have to constantly “measure” how I am feeling, plus the timer going for my med reminders – 5 times a day.

    I look at stairs and could cry because I know what will happen. And how do you tell people? I don’t, I just say I am fine and this is life – but inside I am screaming “but this is my NEW NORMAL and i don’t like it”!

    But then I feel like I am whining. You nailed it, Carolyn. This site is a huge blessing and great info!!

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    1. Hello Tracy – I’m sorry you’ve been struggling with MVD. It’s a tricky diagnosis, not well understood, with limited treatment options. I too live with this diagnosis and have written lots about it (here, here and here, for example).

      One of my readers told me that when she asked her physician if her debilitating symptoms could possibly be due to MVD, he replied: “I don’t believe in coronary microvascular disease!” – as if they were talking about Santa Claus or the tooth fairy…. (NOTE: time to get a new doc!!!!)

      I think that researchers like Dr. Charmaz do a great service to all of us (no matter what our chronic illness diagnosis) by focusing on quality of life issues. We don’t feel quite so alone when reading abut her work on our behalf! And she reminds us that every small step forward – no matter how tiny! – really matters to help us avoid staying stuck in regret and resentment.

      Take care, stay safe… ♥

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  2. Hello Carolyn,

    I appreciate your concern! There’s been some heavy smoke in the air, but no danger here. A few hours further north, though, closer to the border, it’s a different story. The ecological effects are going to be terrible, but thankfully due to better evacuation policies we’re not hearing the unceasing horror stories of human loss that came out of Black Saturday in 2009. That’s one mercy!

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  3. Thank you for this post, and greetings from Australia!

    I’m living with CFS/ME rather than heart disease (although I also have symptoms of POTS, and the next doctor who tells me my pounding heart is ‘anxiety’ will swiftly find out that the only thing stronger than debility is wrath), but every point in your article gave me a pang of recognition. I’ve bookmarked it to share.

    I have actually grown as a person during my illness – for me, that’s one of the few benefits of spending so much time flat on my back with little to do but think and reflect – but it’s now reached the stage where I think, ‘Okay, I’ve learnt all sorts of important life lessons… now can I PLEASE have a life again so I can apply them?’

    I’ve just bought a copy of Kathy Charmaz’s book, based on the excerpts you included here – it looks absolutely spot-on about the ongoing effects of chronic illness, and I’m looking forward to reading it.

    Thank you for your advocacy for patients, and for pointing us toward resources like this!

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    1. Hello Penny, and greetings from Canada! So glad you found my site, and especially glad that you now have a copy of Dr. Charmaz’s book! You are so right – no matter what the diagnosis, those living with chronic illness do face ongoing effects, big and small, that we may have never even imagined, pre-diagnosis.

      Loved your phrase, “the only thing stronger than debility is wrath.” All that bed rest has given you strength…

      We here in Canada have been following with great concern the awful daily news from Australia about your fires. I hope you are not personally in danger, and that rain and relief will come soon…

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  6. Thank you for reposting this. I think this was before I started following your wonderful blog, but what you say here is so true. Great thoughts as usual, Carolyn! Also, best wishes with your new writing project. Excited for you!

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    1. Thanks for your kind words, Nikki! I love what Dr. Charmaz has written about this ‘loss of self’ concept – her work rang so true for me, too. Every once in a while, I come across a researcher who somehow speaks to me just as if she’s already taken up residence in my own brain! We’re in countdown mode to my book’s launch this fall (just finished all the copy edits and am now awaiting page proofs – very exciting stuff!)

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  8. Thank you for the article. I have been trying so hard to live my pre-heart attack life, determined to not let it diminish my lifestyle/work and activities. I have just recently gone on temporary disability at the urging of my loved ones. I now understand that I am not able to perform my job duties/activities as I had prior to heart disease.

    I am really doing a lot of soul searching. Yes, I want my old self back, but it is time to be realistic and move forward and do what I CAN do. I still want life in my years, it will just be different.

    This blog has done wonders for me, THANK YOU!

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    1. Wow. Michelle, I felt like I could have been reading my own words when I read your comments – thanks so much for sharing them here. I too had to be forced to apply for extended medical leave because it was crushingly obvious to me (and unfortunately, to all of my colleagues) that I could no longer function during my return-to-work trial, not even half-days. I was devastated. Like you, I was desperate to get my old life back. You are so right – life WILL be different, but over time I hope you’ll come to a place where you will appreciate the “life in your years”. Best of luck to you…

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  9. Hi Carolyn,
    Such an interesting topic. I think I commented on the original version too. This topic seems to always grab my attention! I agree, the world is set up for the healthy. This creates problems. How could it not?

    Even with the natural aging process, problems result from this “set up” for everyone eventually. When a person has a chronic illness, it’s certainly an ongoing thing, this struggle to regain a sense of your lost self. I would say it’s the same for me too, and many other cancer patients I know.

    The point made about an illness event being a tool for self-discovery really strikes me, since as you know, I have had a cancer diagnosis. As you also know, I do not find that I had some amazing enlightenment experience as a result of my cancer diagnosis. That whole ‘illness as a tool for self-discovery’ concept just rubs me the wrong way. It seems to be one more way to re-frame illness as a gift and I realize some people do view their illnesses that way, but as for me, no way.

    I still feel that loss of self every day. So why do I keep blogging and talking about cancer so much? Probably for the same reasons you keep giving your talks. Sorry to ramble. Thanks for the post.

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    1. Hi Nancy – thanks very much (again!) for weighing in here. Just for fun, here’s your (very good) comment from last year when I first ran this post about Dr. Charmaz’s research:

      “The loss of self is very real and I don’t think this sense of loss necessarily ends when treatment stops or after a certain amount of time has passed. I am still trying to reclaim my ‘old self’ in so many ways and at the same time move forward by accepting who, what and where I am now. There is so much collateral damage that goes along with breast cancer treatment. I am still trying to put the pieces back together and I work daily at not comparing the old me with the new me. There are days when I still feel as if I fell through a trap door.”

      You’re so right – and it’s not just about illness, no matter what the diagnosis. And this post has been shared a lot on Twitter since it ran yesterday morning, including by some sports docs who say that this “loss of self” crisis also applies to elite athletes (like the ones we’ve just watched at the Rio Olympics). You can imagine how this applies if you’re an Olympian who has spent years building a self-image focused only on continuing to excel in your specific sport – and then suddenly it’s all over (due to injury or retirement or inability to maintain your peak performances any longer). Talk about a loss of self – while trying to seek the “simultaneous development of equally valued new one”.

      Re: why do you and I continue to write/speak about our health crises? Some academics like Dr. Al Sieben theorize that it’s due to one of two main reasons, for example: “…they talk or write about the trauma in a way that is helpful to others”. I like that!

      NOTE FROM CAROLYN: Readers!! Please check out Nancy’s excellent memoir called “Cancer Was Not A Gift and It Didn’t Make Me a Better Person“.

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  10. Important topic that affects my heart itself as I work my way through the emotional side of 4 years of chronic, hard-to-manage heart stuff. Great timing, I have just started a concerted work-through of these feelings with my coach and I see so far:
    – both parents used illness to manage stress (will be good to get that out of the picture)
    – I can practice how it would feel to be centered and balanced even here
    – and I see that I’ve got to go deeper for my self-worth.

    It’s no longer about what I do, but who I am. This is so hard. And being kind and compassionate to myself without going into victimhood or fear is worthy work.

    Thanks so much for this blog!!

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    1. Thank you for sharing your unique perspective, Lian. You’re right – it IS worthy work. I especially love your second point (“practicing how it would feel…”). Similarly, I have found the “act as if…” reminder very useful over the years. Self-compassion is the key – more on that subject here! Best of luck to you…

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  12. It took several years before I came to the self realization that I was cramming lots of activities into my life to prove to everyone that I was still a viable human being with worth.

    Then, I realized that that goal was not to show other people, but to show myself I was still valuable as a person. That was a wakeup for me.

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    1. That’s a huge wakeup, Sharen! Thank you for that. Your words remind me of something I mention briefly in this post (doing my public presentations on women’s heart health). In the early days immediately post-Mayo training, I said YES to every speaking invitation, even evening talks that would mean I’d be lugging my big boxes of Red Bag handouts in and out of the car, and forcing myself to stand for hours despite feeling dead-tired. One horrible evening, I had a major meltdown during a jam-packed talk and cried all the way home. A dear and brutally honest friend asked me later that week: “You hate doing talks in the evening when you’re exhausted and sick. What are you trying to prove?” That was a turning point. What WAS I trying to prove?

      Like you, I think my (unconscious) goal was to prove that I could still do it, that I was still valuable. Those days are gone – I do ONLY daytime presentations now. Even when I’m invited to speak at conferences, I now answer ‘only if my talk can be scheduled for the morning’. It’s way better for me – and for my audiences – now.

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