The familiar self, the unfamiliar self and the recovery of self

~ Carolyn Thomas

by Carolyn Thomas   ♥   @HeartSisters   

As Bruce Springsteen once sang, “You get used to anything. Sooner or later it just becomes your life.”(1)  Bruce was right. Since being diagnosed with heart disease in 2008, I’ve observed a bizarre and surprising change in my ability to adjust to ongoing cardiac symptoms. My symptoms have not changed. But at some point, I just got better at adjusting to them.

In fact, I suspect that the chest pain which just feels “normal” to me by now would make most other people head straight to the Emergency Department.      .       .     

Back in 2008, following the drama of surviving a misdiagnosed heart attack, I was subsequently diagnosed with another cardiac condition (two for the price of one!)  It’s called coronary microvascular disease, a painful and debilitating disorder of the smallest blood vessels feeding the heart muscle – too small to stent, too small to bypass, and a condition far more often seen in women than in men.

Some days are worse than others, and in between I’m able to manage surprisingly well most of the time with the help of my pain specialist and his team at our local hospital’s Regional Pain Clinic. (Coincidentally, he’d already done a one-year post-graduate fellowship in Sweden studying Inoperable Coronary Microvascular Disease before we met). He also referred me to the free Pain Self-Management classes and Health Recovery programs that have profoundly affected my own recovery and quality of life.  Thank you, Canada  🇨🇦 a.k.a. “commie-pinko land of socialized medicine!”

Over time, the difference between cure and recovery has become clearer to me.

There is no cure for cardiovascular disease. Skilled cardiologists can re-open our blocked coronary arteries with stents or bypass grafts, replace our failing heart valves, zap our wonky electrical circuits – but what they cannot do is change what caused our cardiac problems in the first place – in most  cases, decades earlier. See also: The Myth of the Heart Disease Cure

Dr. Wayne Sotile (author of one of my favourite books, Thriving With Heart Disease), lists seven sudden changes commonly observed immediately after a cardiac event. On his list of potential stressors that newbies often face, how many of these ring true for you, too?

  • a flood of preoccupation with death and, sometimes, overwhelming fear of death
  • immediate awareness of a new set of worries about your future ability to resume normal activities and to adjust to any lingering physical effects of this diagnosis
  • sudden disruption of customary daily lifestyle, including participation in work, social and family activities
  • obsessive questioning about why this illness occurred, what might have been done to prevent it from happening, or what needs to be done now to prevent a recurrence
  • dependence on the unfamiliar and often confusing environments of hospitals and doctors’ offices and the people who work there
  • taking medications that often make you feel and act strangely

These are some of the realities facing freshly-diagnosed heart patients as they face recovery. Meanwhile, an interesting study published by Scandinavian researchers stressed that this process of recovery includes ongoing adjustments to both physical and psychological impairments.(2)

These researchers, led by Dr. Synne Garder Pedersen at the University Hospital of North Norway, saw how a patient’s quality of life can dramatically change following a health crisis (in this particular study, a stroke)  because a serious diagnosis like this affects what they call “a known way of being in the world.”  Here’s what they concluded:

“We found that their quality of life reflected the individuals’ reconstruction of three intertwined and negotiating processes:

  1. a familiar self  (“Basically, I am the person I have always been.”)
  2. an unfamiliar self  (“My life is turned upside-down. This makes me angry and afraid.”
  3. a recovery of self  (“I have accepted this situation for what it is, and I don´t get annoyed or depressed by it now. But it is sometimes hard for me to accept that I cannot accommodate the outlook that I had before.’”)

Many of my readers have told me how much they have intuitively fought that latter concept of acceptance, by the way. These are often heart patients who are holding out for improvement, and are not yet ready to accept that improvements may not come. They reject the term “the new normal“, because they long to return to exactly the same normal “familiar self” they knew and loved. As one reader wrote:

”     I hate that term. I want my OLD NORMAL back again. I don’t want to have to adapt and adjust to what seems like a stranger’s life, not my own anymore. To give in to this NEW NORMAL would feel like just giving up hope.”

As we might expect, the “unfamiliar self” experience is especially prominent at the time of diagnosis, because that time is so disruptive to our“known way of being in the world”.

Over time, however, although the alarming physical and psychological symptoms we experienced when first diagnosed may still remain, the “high alert” way our nervous systems respond to signals has now somehow adapted as we become more familiar with those signals.We may also repeatedly learn over time that despite episodes of symptoms that feel terrifying (“Is this something? Is it nothing? Should I call 911?!?!”), we are still here. We did not die, no matter how convinced we were at the time that death was imminent.

Researchers like Dr. Kathy Charmaz (author of the useful book Good Days, Bad Days: The Self and Chronic Illness in Time) have spent decades studying what she calls a “loss of self“:

“The loss of self is a fundamental form of suffering in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones.”

And as the Scandinavian researchers observed, recovery is rarely a linear path, but rather up and down and backwards again. sometimes interrupted by the internal battle between the familiar and unfamiliar self, in an ongoing and interrelated process the researchers call “being, doing, belonging and becoming”.

♥

1. ©Bruce Springsteen lyrics, “Straight Time”, from The Ghost of Tom Joad, Columbia Records, 1995.
2. Pedersen, S. G. et al. “Experiences of quality of life the first year after stroke. A qualitative analysis.” International Journal of Qualitative Studies on Health and Wellbeing. 2019. 14 (1), 1659540.  doi:10.1080/17482631.2019.1659540

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Q:  Can you relate to that concept of familiar, unfamiliar and recovery of self?

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NOTE FROM CAROLYN:  I wrote about adjusting to life as a heart patient in my book, “A Woman’s Guide to Living with Heart Disease“ , published by Johns Hopkins University Press.  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 (use their code HTWN to save 30% off the list price).

See also:

–Life Before Diagnosis: Not As Perfect As We Recall?

–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

-Living with the “burden of treatment”

-How to be a “good” patient

Published by Carolyn Thomas

24 thoughts on “The familiar self, the unfamiliar self and the recovery of self”

  1. I just discovered your blog after having a stent placed in a 90% blocked artery on the left side of my heart. I’m left with a good deal of fatigue. I also had diarrhea for many days. Where cleaning my home used to take 90 minutes, the other day, I had to take a couple of breaks. I’m a newbie at this and heart disease runs rampantly in my family.

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    1. Hello Ellen – glad you found your way here. I’m not sure how long ago you had your stent implanted but I’m guessing you’re still in very early weeks. Lots to get used to at this point. It can be a shock when something that used to be no problem at all suddenly requires rest breaks! This WILL get better over time as you recover both physically and psychologically. Your only job right now is to recuperate, and become a world expert on what has just happened to you. The more you know, the more confident you’ll be feeling when making decisions as you go on.

      Best of luck to you – take care and stay safe. . . ♥

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  2. Two comments: One regarding the symptom journal: really important. I’ve learned that to get through to physicians you have to communicate in ways that they will understand. Many, if not most, want data and evidence.

    Right now, I am compiling a graph to possibly demonstrate what’s working with my microvascular disease and what isn’t because I think a medication I take only occasionally is helping a lot…. Many physicians are hard-core, data driven, evidence based scientists, which is fine… that’s how they are trained… but telling them something’s off doesn’t always get their attention (although IMO it should).

    Secondly, the loss of the self and the new self: I can certainly relate… when my heart was punctured and I nearly died twice, and fortunately revived, I felt that I was not the same person as before; it was very difficult… there is a definite line in the sand marking before and after; but in another sense, I am struggling now with another aspect of selfness: my entire adult life, I have been a busy person and had to work hard to get things accomplished; sometimes I just had to slog it out, make up my mind that I would do what it took to finish the project; complete my workout; write the report, etc.

    Twice in the past two years my cardiologist has had to remind me to pace myself – I see that I am taking that same attitude to exercise now as I did when I was younger, only now there are at times unwelcome consequences to just pushing through.

    Being forced to work with my limitations instead of ignoring them is new.

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    1. Hello Helen – thanks for those compelling points (the Symptom Journal suggestion was mentioned in Jennifer’s response, below). I once worked with a woman who had lived with Type 1 diabetes her entire life. She showed me a small well-worn purse booklet in which her daily test numbers were recorded, with highs and lows highlighted in different colours. It was a remarkably striking record, flipping through page after page and quickly spotting patterns. Useful for busy doctors to review!

      Your descriptions of that ‘loss of self’ is a good example of how we don’t change our entire personality just because we have these new diagnoses. “Being forced to work with limitations” is a reality most of us “busy persons” have never had to question.

      Reminds me of my pain specialist, in response to my great disappointment that when I tried to walk my 10,000 steps, I felt awful and had to collapse in a heap for the rest of the day. He looked at me with one eyebrow raised and suggested: “Why don’t you start with HALF of that goal and see how it goes?” That seemed so obvious – and I was eventually able to start slow and VERY gradually increase over months IF I felt up to it – but I just read recently that there doesn’t seem to be much overall medical benefit in any walking goal over 7,500 steps anyway! Yay!

      Your cardiologist is doing you a favour…

      Take care, stay safe… ♥

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  3. After surviving a Widowmaker and then a Takotsubo I never knew what was “real” anymore. I say that literally as well as figuratively. I’ve had doctors and nurses and family and friends and just-plain-nosey-people tell me “don’t let this make you crazy!” to ” why didn’t you call me sooner?!” You know, Carolyn, six years later I no longer take any of my heart medications or call my cardiologist except when my checkups are due. And you know what? I’m doing just fine.

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    1. Hello Patricia – I know of a number of heart patients who have also been able to gradually reduce or sometimes even safely discontinue their meds (for example, those following the strict Ornish diet/lifestyle program claim that this can happen after five years of following the program).

      I hope you’ll discuss this decision with your cardiologist just so there are no surprises…
      Take care, stay safe…♥

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  4. Hooray for you Carolyn , you are wonderful. You are doing all of us such a service with the example of your grit and perseverance in the face of your own horrific experience with heart disease. Plus I love your style and turn of phrase.
    Carol

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  5. Hi Carolyn,

    As I read this article, I felt like it could really apply beyond heart disease into just aging in general.

    We are currently dealing with my mother-in-law who just turned 80 in September. She is so frustrated and angry that she can’t do the things she used to do or wants to do and by the loss of control over her own body — her life has turned upside down and she is the type that will get combative, deny and fight to the bitter end rather than do what she needs to do, like use a walker. She will probably never accept her new normal, certainly can’t recover the self she used to have, which makes it incredibly hard on the rest of us trying to help her.

    As I watch her struggle and slide downhill, I’m becoming panicky about the future for myself. In my 60s, I am already experiencing changes I don’t like: joint pains, difficulty on the stairs, etc. Heart disease is part of it (2 stents) but it’s under good control I think at this point; the only chest pains I’m having lately are almost certainly due to anxiety and difficulty breathing with a mask on LOL!

    At least as I age I can take lessons from this time and try to make it easier on my kids in the future by cooperating and trying to accept the changes and not fight against them.

    By the way, my currently unemployed adult sons would love to have your commie-pinko healthcare, especially my younger son who went without insurance for years and struggled with severe asthma without the medications he needed. I never thought until this election how strange it is that health insurance is linked to employment in America. It’s always been that way and I never thought anything was wrong with that, until my sons pointed this out to me.

    Looking forward to a new administration (if we can just get rid of the current one!)

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    1. Hello Meghan – I often think that these miserable people were put into my path to remind me NOT to turn out like that! My late mother was increasingly demanding and critical as she sunk into dementia, and had driven away every close friend she’d ever had (some were 60-year old friendships!) And she no longer had insight into why these people no longer wanted to be around her. I was actually surprised when so many of them showed up at her funeral service – but they all came to support our family despite how she had treated them in her last decade or so. So whenever I hear myself muttering in that mother-like fashion, I try to smack myself out of it!!

      A for-profit healthcare system that is essentially run by for-profit insurance companies is an unusual and expensive way to run a healthcare system – and a complete mystery to your Canadian neighbours….

      Take care, stay safe… ♥

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  6. I am not sure what is going on with my body all I know is I don’t like it and dr’s say I’m ok when I Know I am not. what do I do, who can I talk to? I am not liking this can someone please help me?

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    1. Hello Jennifer – I’m sorry you’re experiencing these distressing symptoms. I’m not a physician so of course I cannot comment on your specific situation, except to generally tell you that what has helped many people is to start a Symptom Journal (write down the date, time of day, detailed description of your symptom(s) and what you were doing, feeling, eating in the 1-2 hours leading up to that symptom). Sometimes a pattern begins to emerge that will help your doctor to arrive at a diagnosis.

      Good luck to you – stay safe… ♥

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  7. It’s my experience that the familiar, the unfamiliar, and the recovery of self are not linear and stable, but can slide around and be situation dependent. After life-changing health events, it’s been important for my adult children to visit me. While they have physically and emotionally supported me, it’s been clear to me that they have needed to see that I’m still me. I have assured them that I am still their familiar mum, despite recent events.

    At the same time I’ve been still discovering the unfamiliar me. Even when the recovery of me seems to have settled, I am startled at times by the unfamiliar me, as if when I relax I’m taught a lesson about new limits I hadn’t appreciated or accepted.

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    1. Such important points, Jenn. I’m guessing that it’s not only important to your kids to visit and see that you’re still “you”, but it’s important for you to be spending time with them, too. Both perspectives are part of that “familiarity” we all need, especially during those “sliding around” times.

      I think there’s nothing quite like settling into a nice confident sense of knowing what’s going on to bring on a jolt of harsh reality! I used to feel despondent by getting such “lessons” out of the blue – now I try to remember to just appreciate the smallest moments knowing that nothing stays the same (both the good and the bad). “This too shall pass” has ultimately become my mantra!

      Take care, stay safe… ♥

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    2. Jenn, I have felt this sense of slipping from one self to the other for quite awhile. I had just kind of adjusted to my recovering self after surgery for HCM when I developed arrhythmias that caused me to almost pass out without warning.

      Then 2 weeks after that, I developed a new kind of chest pain (different from HCM) and required a STENT. It’s been 3 years since my stent and I feel like I am finally at the non-PTSD Recovery self AGAIN.

      I am not freaking out with my episodic shortness of breath and chest pain …. though I’d rather not have either, I am accepting this new normal.
      Until the next time a new issue arises anyway LOL

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      1. Hi Jill – while reading your response to Jenn, I was reminded of a time shortly after being diagnosed with coronary microvascular disease when I heard from a woman who told me she had been living with this diagnosis for 12 years. But instead of being inspired, I was horrified. My immediate thought was: “TWELVE YEARS?!? I can’t do it. I can’t survive 12 more years of feeling like this!”

        Well, fast forward 12 years – and here I am. Still around. . . Who’d a thunk it back then?

        Take care, stay safe. . . ♥

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  9. I certainly relate to mourning the loss of my former self. Hard to tell what is aging and microvascular disease all aggregated by the pandemic that means I can’t go the gym for regular workouts. I like to imagine that it’s all better now when I have a long stretch without angina but then last month I forgot to take my cardiac meds and got a rude reminder that I am dependent on them.

    By the way, most of us south of Canada long for that commie-pinko socialized medicine. Also known as responsible, compassionate government.

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    1. Hi Sara – “mourning” is so often the right word to describe that sense of loss for the ‘self’ we used to be. Maybe the loss is intensified when it’s the result of an unexpected diagnosis like microvascular disease – as opposed to the gradual little-by-little similar losses that are part of aging. Glad you mentioned the wide-reaching effects of the pandemic – another unexpected change for all of us who are used to thinking we’re pretty much in charge of our lives!

      That “commie-pinko socialized medicine” comment is an inside joke here in Canada; we know that there are some in the U.S. for whom the Canadian healthcare system seems to be a scary concept. It’s certainly not perfect, but it typically has an approval rating of over 80% among Canadians. When I had my heart attack in 2008, for example, I did not worry for even one moment whether or not I could afford to go to the hospital (e.g. I did not have to pay for my Emergency visit, all diagnostic tests, cardiac procedures, medical/nursing care, hospital stay, and follow up consultations for life with a cardiologist). That’s a very different reality compared to many of the American women I’ve met since then with horror stories of bankruptcy or losing their homes or having their overdue hospital bills sent to collection agencies. I’ve never heard of those things happening to Canadians.

      Take care, stay safe… ♥

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        1. That is hilarious! What was going on at Reed College anyway? I must look that up – sounds like a scary place! 😉 Of course, in the 60s our poor parents were alarmed by so MANY things, weren’t they?

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