The “new normal” – and why patients hate it

by Carolyn Thomas      @HeartSisters

The “new normal”.  It’s what the freshly-diagnosed heart patient is supposed to get used to now. The implication seems clear:  Forget about your old life and the person you once were.”  Many of us fight that “new normal” label, but there might be another way to look at this.   .

Here’s how one of my blog readers described the concept:

“A lot of people at my Cardiac Rehabilitation classes have talked about this NEW NORMAL that I’m supposed to get used to from now on. 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. 

“I am a competent successful active outgoing business owner, but since my double bypass open heart surgery, I feel weak, anxious, weepy and frightened at every little twinge or pain. THIS is what I’m supposed to get used to? No way.”

When I was first diagnosed, I too felt like I was expected to get used to living somebody else’s life from now on.

It’s almost as if I went to bed as one kind of person, but woke up the next morning as an entirely different person (the kind of healthy person who has never, ever seen a cardiologist but now apparently needs one!)

When I wrote about this predictable response later, I compared it to being deported to a new country, a place where you don’t know the language, the customs or how you will ever get back home.

But this “new normal” isn’t necessarily a permanent state. Think of it as more of a transition while we slowly adjust physically and psychologically to what has just happened. This “new normal” stage helps us to gradually plan ahead rather than looking wistfully behind at what used to be.

There’s a lot to adjust to. As my Alaska friend Dr. Stephen Parker (a cardiac psychologist and – more importantly – a longtime heart patient himself) once listed some of his own “swirling emotions” following his first heart attack:

“Relief at survival — disbelief and anger that it happened — grief for everything that has and will be lost — gratitude to those who helped — extreme vulnerability in a previously safe world — fear of what the future might bring…”

One reason I had trouble adjusting to the “new normal” was the tendency to confuse chronic illness with acute illness.

Here’s an example. When you’re diagnosed with an acute illness, you:

  • get sick
  • get diagnosed
  • get treated
  • get better
  • thank your brilliant doctor!

But in ongoing chronic illness, it rarely works that way. Yet we still cling to what’s known as the cure myth.

Cardiologist Dr. Stephanie Moore of the Heart Failure and Cardiac Transplant Program at the Massachusetts General Hospital Heart Center explained the confusion:

“One reason some women aren’t too concerned about heart disease is they think it can be cured with surgery or an angioplasty procedure and they won’t have to worry about it again.

This is a myth! Heart disease is a lifelong condition and once you get it, you will always have it.”

For some time after my heart attack, I was overwhelmed, exhausted, and reeling from (as my heart sister Jodi Jackson calls this predictable phase) Post-Heart Attack Stun.

By the way, this state of Stun just might help to explain why some new heart patients are simply unable to follow the long list of heart-smart lifestyle improvements initially recommended by their physicians (“Take this fistful of new cardiac meds! Lose weight! Quit smoking! Eat healthy! Exercise every day!”)

But gradually, amazingly, we’re able to adapt little by little to each stage of recuperation – especially if we start learning as much as possible about what has just happened. A heart patient’s only job now is to become the world expert on the new diagnosis.

Those days of feeling terrified by every unusual twinge (“Is this something? Is it nothing? Should I call 911?!?!”) do gradually occur less frequently.

The “new normal” I was suddenly forced to face 11 years ago is no longer “new”. It’s just “normal” now. And as my former colleagues still tease me, this is simply what happens when a PR person has a heart attack: “We just keep writing and speaking and looking stuff up – because that’s all we know how to do!”

But meanwhile, what to do in the very early days while we’re still trying to get our heads wrapped around what this “new normal” even means? 

As I wrote in Chapter 10 of my book:

“I know that it’s taken me a long time to arrive, skidding heel marks and all, at a realization that perhaps has been blindingly obvious all along. I can either choose to focus on all that I’ve lost, or I can focus instead on what I still have.”

Consider also the wise words of Jenni Grover, author of Chronic Babe 101 and a woman who lives with a number of debilitating chronic illnesses:

“Do not let your chronic condition become the ONE THING that defines you. Too many people never give themselves a day’s rest from thinking or talking about their diagnosis. Even if you have daily symptoms that make it impossible to forget you’re truly sick, learn ways to enjoy your life in spite of them.

“There will be days you can’t get your game face on – and that’s okay – but whenever possible focus your attention back to something you love, that gives you joy, that is uniquely YOU – not your illness.”

NOTE FROM CAROLYN:   I wrote much more about the adjustment to becoming a patient 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 their code HTWN to save 20% off the list price).

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Q:  How did you finally come to terms with your own “new normal”?

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See also:

Good News: Your Story is Not Yet Locked In

Looking for Meaning in a Meaningless Diagnosis

I Don’t Want to Talk About It

How Our Girlfriends Can Help us Get Through the Toughest Times

Do You Think Too Much? How Ruminating Hurts Your Heart

Two Big Factors that Can Impact a Patient’s “Loss of Self”

Why We Keep Telling – and Re-telling – Our Heart Attack Stories

Listen Up, Ladies: 16 Things I’ve Been Meaning to Tell You

Dear Carolyn: “Adapting to Adaptations?”

10 thoughts on “The “new normal” – and why patients hate it

  1. I love this post Carolyn and can really relate to it. So many ways that we can still experience joy in our new slower lives, savouring each day and all it may hold.💕

    Liked by 1 person

    1. So true, Kit! I believe it is a genuine turning point when that light bulb goes on. Before that, we long to be just like that former self (the one that seems more absolutely perfect the more we pine for long lost days!) I was thinking of that this morning – back to my old days working in PR when a “normal” day was spent running around with my hair on fire, juggling multiple deadlines, all due yesterday! This morning, instead of all that fiery hair and juggling that seemed so “normal” for decades, Everly Rose and I found a gigantic pile of leaves while I was walking her to daycare – and we both jumped in! We had all the time in the world, just to have fun together… These “slower” moments in life are pretty lovely… ♥

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  2. Today’s topic could have been meant for me. I was a high energy, healthy, active person, who swam, hiked, and kayaked. The day before my angiogram, I had hiked 15 km with my hiking group and when I left the cath Lab with having nothing done, I thought, they must have been wrong, “there is nothing wrong with me”.

    Unfortunately, this was not the case. I was told that I would likely require hybrid surgery as I had major blockages and my heart had actually formed its own bypass.

    I had quadruple bypass surgery 22 months ago. Three of the bypasses failed and I subsequently had 4 stents put in.

    I have had difficulty with the “new normal” as I still feel I have my old energy level, and I fight the “new normal” every day of my life.

    On the one level I know I am not the old me but on another level I just cannot accept this. I think the change may be slowly taking place, but somehow, I am not yet ready to give in.
    I think that the issue is that, if I accept that I am now something different, I may lose the tenuous grip I now have on life.

    Totally irrational, but at this point I am still in transition.

    Liked by 1 person

    1. Hello, Ann. You’ve had quite the dramatic ride for the past 22 months. No wonder you are now having trouble accepting what has happened to you…

      I can sure relate. I was an active, busy distance runner before my heart attack (and then subsequent diagnosis of coronary microvascular disease). I resented every new physical limitation.

      For example, I had to stop working, which was devastating, plus I suffered from crushing fatigue that worsened as the day went on, yet I insisted on going out in the evenings as I’d always done, despite the exhaustion. But doing so would then take me two full days afterward just to recuperate – until a friend asked me point blank: “What are you trying to prove?”

      There’s actually a whole field of psychology research that looks at sense-making – when patients try to make sense out of a medical condition that makes no sense at all, and then ultimately make peace with a body they believe has let them down. One Russian study, for example, looked at heart patients using a number of psychosocial coping strategy assessment tools. Researchers identified four cardiac conditions, any one of which substantially increased the negative subjective “meaning” of that disease for patients. Sounds like you had at least one major factor: “the onset of heart disease in midlife (younger than 65 years) with high incidence of recurrent coronary events.”

      I think you’re absolutely right: you’re in transition now, and it is not a good place. Time to move on?

      I hope you will consider making an appointment with a professional counselor, pastor or therapist to help give you some support getting through this transition. Best of luck to you, Ann…

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  3. Dear Carolyn….. rather than answering your new normal question directly….I want to grab on to the crux of the healing process you have mentioned.

    Those who have acquired a chronic illness, what ever it is, must go through a grieving process: We have lost something….we have lost good health, we have lost dreams, we have lost a part of our heart…. Grief is a natural process we go through to move on into a “new normal”.

    Elizabeth Kubler Ross names stages in order of occurrence: Denial, Anger, Bargaining, Depression, Acceptance( or new normal). The length of time needed in each stage To move to the next stage is different for each person. The important thing is to evaluate yourself and where you are in the grieving process…..and if you are stuck in a certain stage ….get some help…Self-Help,Spiritual counselor, Psychologist, Support Group.

    Being stuck in denial, anger or depression can keep you from moving into your new normal. Another aspect that you mentioned is SO important!!! Positive thinking, gain over loss, goodness over badness.This is NOT JUST A NEW AGE PLATITUDE.

    It has been proven that our thoughts affect our body chemistry and the chemistry of negative thinking is destructive while the chemistry of positive thinking is healing. Energy always follows thought. Be Aware, Be okay with the process, and Know when you are stuck and might need help to move forward.

    Liked by 1 person

    1. Thanks for sharing that perspective, Jill. I suspect that my blog reader (the one whose comment I quoted at the beginning of this post) was clearly demonstrating her grief at many losses (good health, dreams, “a part of my heart”, etc). To be expected to accept the “new normal” her cardiac rehab friends were talking about was almost too much to bear: “To give in to this NEW NORMAL would feel like just giving up hope.” So she was bravely hoping that she'd one day soon snap back to her old self – despite the reality she was living.

      I worry that, for many of my readers, this kind of grief response is a complete surprise post-discharge.

      Clinicians should know about this serious issue (affecting all areas of "compliance" – that hideous word!), yet when I was discharged from the CCU, not one person in that hospital told me before I left the building that these grief reactions are common, to be expected, treatable and usually temporary. What a relief that would have been to know all that ahead of time!

      And the act of seeking support or counseling is in itself a decision that's often beyond the ability of a person like my reader feeling “weak, anxious, weepy and frightened”. Between the lack of awareness of other docs of the need for support, and the pervasive stigma of seeking professional mental health help for oneself, patients ironically need to be stronger than most feel in order to insist on a referral!

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      1. Yes, Preparing people for PTSD after discharge home or after diagnosis, giving resources, following up on a patient’s psychological wellbeing as well as physical is sorely lacking among hospitals and physicians…..

        I don’t know about Canada but here we have these God awful post-discharge questionnaires to rate hospital stays …. and they get stars or something …. but they stop evaluating at the hospital door. In the doctors office everyone gets asked “Have you been feeling, down, depressed or disinterested in daily living?” and that’s it.

        I guess people like you and I keep filling in the gaps and hope things change for the better…. I don’t know about you but I don’t have the energy to go to rallies or petition congress…. I’ll just keep on being the best person I can be each day and type a lot. 😎

        Liked by 1 person

        1. Ha! I think being able to “type a lot” can often be a productive thing! And most days that’s about all the energy I can muster, too…

          I just came in from a long walk out in the sunshine – and the fall colours are so spectacular. (But is 3:30 pm too early for jammies?)

          I always look forward to seeing your name in my ‘comments’ queue, Jill. I find your comments here to be informed, wise and right on point in terms of “filling in the gaps”. Thanks again…

          Like

          1. Sunday is my laundry day…I got dressed this morning, did my laundry, took a 3 hr nap. Now I am getting on my robe to have tea and watch some television before I go to bed!! I feel very lucky that I am 70 yrs old and gave the freedom to be tired! I can’t imagine if this happened to me in my 30s or 40s when I was married and had children!

            It is never too early for jammies!

            Like

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