Do you want the truth, or do you want “Fine, thank you”?

17 Jul

Carolyn Thomas    @HeartSisters

One beautiful afternoon last fall, I was walking my daughter home from her downtown office at the end of her workday. I love these mother-daughter walks of ours. We used to do them quite often (before Larissa recently delivered my darling grandbaby Everly Rose and started her extended maternity leave).

She’d phone me just as she was about to leave work, and we’d each start walking from opposite ends of Rockland Avenue (a long leafy ramble that starts downtown near her office and finishes up near our respective homes in Oak Bay Village). We’d meet up about halfway to walk the rest of the way home together. In this fashion, we each got an hour’s brisk walk into our day, but best of all, we got to chat all the way home.

But this one afternoon, while we were walking along Rockland, I felt the familiar yet ominous crush of chest pain as we walked, that frightening kind of angina that seems to get worse with every step.  After trying my best to ignore these symptoms at first, I finally had to stop her while she was in mid-sentence, fishing in my bag for nitro spray as I lurched towards a nearby stone bench to sit down.

It occurred to me as Larissa sat close beside me on that bench, watching to see if that first dose of nitroglycerin would work or not, that it had been a long time since she had first watched me, post-heart attack, dose myself with this vasodilating drug that was to become my constant companion.

Living with the daily pain of chronic angina caused by ongoing coronary microvascular disease (MVD) means that in a typical week, I might have to resort to taking my nitro several times per week. This often nicely does the trick in one or two doses in helping to dilate those constricted arteries, thus relieving my symptoms enough so that I can function.

Chest pain, by the way, is very different from chronic back pain or joint pain or stomach pain – because pain in your chest can be an advance warning that the precipitating event is fatal.

But on a bad day, pain might hit much harder and much more frequently, and those are the scary times I’d be taking nitro several times a day, clutching my chest, fearful that today might just be the day I’d need to call 911 and go back into hospital again. 

This fall day was one of those days. But clutching your chest in pain is one thing when you’re alone and anxiously monitoring symptoms, and quite another when you also have your only daughter staring intently at your face as you’re anxiously monitoring those symptoms.

Part of me (the parent part) desperately wanted things to snap quietly back to normal so as not to further worry my daughter, quite separate from the part of me (the heart patient part) who felt very afraid.

On that fall day, within a few minutes, I was relieved to feel a slight lessening of the vice grip within my chest (thank you again, my nitro friend!) and was quick to laugh off Larissa’s obvious concern after that.

No big deal. Not to worry. Now, what were you just saying…?

Ironically, she knows of course that I do use nitro regularly (I never leave home without it), yet it still seemed shocking to her to watch it firsthand because I’ve done such a good job of hiding it from her and the rest of our family.

Similarly, the other day when Larissa and I were spending time together with her baby, I bent down to pick up something off the floor and heard her suddenly call out in a loud voice:

“Mum! What happened to your CHEST?”

I looked down at said chest. Peeping out from the neck of my blouse while I leaned over was a corner of the white surgical tape holding in place the electrodes of the TENS unit I wear each day. I’ve been using this pain therapy for years as part of my cardiologist’s ongoing MVD treatment plan along with our Regional Pain Clinic. And indeed my TENS therapy is the reason I’m able to function pretty well most days with just my nitroglycerin for episodes of breakthrough pain.  (See more about using TENS therapy for refractory angina at: My love-hate relationship with my little black box”)

Again, Larissa knows of course that I wear this TENS unit every day, yet it still seemed shocking to her to see it firsthand – because I’ve done such a good job of hiding it from her and the rest of my family.

The question is: should patients living with chronic and progressive illness downplay what’s happening to them?

For example, when my grown children, close family, friends (or anybody who is not one of my physicians) ask me:

“How are you doing?”

. . . my stock answer is virtually always:

“Fine, thank you!”

Even when I’m not “fine”, I assume that most people really aren’t asking for the capital T-Truth, but are merely being sociable. So my response is more often than not perfectly acceptable to the question-askers. As this vintage bit of poetry reminds us:

“Don’t tell your friends about your indigestion.

‘How are you?’ is a greeting – not a question!”

Yet there may well be a downside to this common reaction.

Sociologists tell us about a phenomenon called emotional labour, a concept originally identified by researchers in 1983.(1)  It’s been described as the suppression of feelings to provide a welcoming outward appearance.  (Sound familiar, heart sisters?)

When heart patients exhibit emotional labour by putting on their best ‘game face’ so as not to worry families or friends, our outward expression is not always genuinely felt.  (See also: “Smile, Though Your Heart is Aching”: is fake smiling unhealthy?)

But it’s this outward positive expression that can, ironically, serve to make other people around us feel more comfortable even as we are in fact experiencing severe cardiac symptoms. As Nicholas Lockwood explained in his research:

“Heart patients can be attempting to express a positive, pro-social emotion which is not genuinely felt. This masking of genuine emotions not only increases psychological stress, but it can decrease relationship satisfaction. ”

Despite warnings from researchers like Lockwood, I often try to wear my own ‘game face’ around my own kids, no matter how I’m really feeling.

My children were in their late 20s and 30s when I survived a heart attack, and both living out of town. Alarmed by the shocking news about their mother, they flew home immediately to be with me. But when they saw me looking fairly “normal” (walking, talking, smiling, much like my old self), they felt – and looked – profoundly relieved!

And that’s just how I, their mother, wanted them to feel.

Often, we don’t want to bring our illness to others. It’s sometimes motivated by a reluctance to burden those we care most about by adding another layer of pain to what they’ve already been through, or a need to safeguard them from the anxiety our own health issues may cause them.

It’s a real dilemma, for to continue pasting on my happy smiley face no matter what can serve to feed the illusion that I don’t have heart disease.  Busting that bubble causes surprise or shock when that illusion is called out.

I rarely if ever mention my symptoms. I may have to sometimes change or postpone social plans depending on a symptom flare, but don’t feel the need to talk about it unless it’s really, really serious.

But I know people who do feel this need, and particularly as they get older and develop a wider variety of health issues to report on.  So as I get older, I’m determined not to turn into these people. They are the ones for whom the question: “How are you doing?” means open season on what my friend Dave calls “the organ recital”.

Body part by body part, these folks focus on reviewing each and every ache or twinge (or doctor’s visit) they’ve experienced within the past month in excruciating precise detail.

Please don’t misunderstand. It isn’t that I’m not empathetic towards other chronically ill patients and their daily struggles.  And after all, haven’t we legitimately earned the right to whine about our troubles to our friends and family?

Psychologist Dr. Martin Seligman (whose work I really like, and whom I’ve quoted here and here) says NO.

He suggests that ongoing complaining actually worsens physical symptoms by focusing our attention on them.

That’s also what I learned from Nova Scotia’s Dr. Barbara Keddy, author of Women and Fibromyalgia: Living With An Invisible Dis-ease, a book that is remarkably applicable to all patients living with a chronic illness diagnosis. Dr. Keddy has lived with fibromyalgia for over four decades, and is also a heart attack survivor.

She cites, for example, a support group of Toronto women living with fibromyalgia who get together regularly, not to discuss their shared illness, but wellness only. Dr. Keddy explains:

“Reliving past injuries of a physical or emotional nature only reactivates the nervous system. Instead, it is more important to recognize our reactions rather than the specific events related to the trauma. Perhaps this is why talk therapy has not been helpful for people with fibromyalgia.”

So when my family, or my friends (and ESPECIALLY casual acquaintances) ask me the simple question:

“How are you doing?”

. . . I know what my own answer will be.

.

Q:  How do you decide who to tell, and who not to tell?

See also:

.

.(1)  Hochschild, Arlie (1983). The Managed Heart. Berkeley and Los Angeles, California: University of California Press.

.De

17 Responses to “Do you want the truth, or do you want “Fine, thank you”?”

  1. Barbara Keddy July 18, 2015 at 9:50 am #

    I agree Carolyn, it isn’t appropriate to ‘share’ all one’s woes with people who really don’t care or really aren’t all that interested. However, with adult children it really depends. My son who lives nearby does not want to know anything about my health, never asks, whereas my other two sons who live in B.C. want details!

    My friends with heart disease are more interested in my health issues than those who do not have the same concerns; the same is true of those who have pain from fibromyalgia. I guess the same applies- ‘depends’.

    Still, having just completed a 4 week, 3 1/2 hours, three times a week, self-managing pain clinic program I found that the pain was becoming worse as we discussed it non-stop. Others in the group agreed with me.

    So, again, how much detail and with whom, and how often depends. No easy answers!

    Liked by 1 person

    • Carolyn Thomas July 18, 2015 at 10:02 am #

      Hello Barbara – “Depends” does indeed seem to be the most appropriate answer, as you say – especially depends on how long ago the cardiac event happened.

      I think heart patients who have been recently diagnosed or have very recent repeat hospitalizations are the least likely to be actually listening to any “how are you?” answers from others; it’s absolutely normal and expected to feel so overwhelmed at the beginning that all we seem capable of doing is telling our story, over and over, to anybody who will sit still and listen to us.

      I see this frequently in audiences during my women’s heart health talks – some people can scarcely wait to shoot their hand up in the air so they can start telling the entire audience their own story, whereas women whose cardiac event happened long ago may not feel as compelled to talk about it at all unless specifically asked.

      Like

  2. Jennifer July 17, 2015 at 8:32 pm #

    This is a tough question. The answer depends on who is asking and under what circumstances. I generally say I’m fine, thanks, but a few people occasionally then ask how I really am. I then feel like I can be more honest, but again, my answer depends on the context and the person who is asking.

    Liked by 1 person

    • Carolyn Thomas July 18, 2015 at 5:53 am #

      I agree, Jennifer! That repeat question is the difference, isn’t it? It’s like a clear invitation from somebody who actually does care about the answer – but as you say, depends on the person asking and how much we want to share.

      Like

  3. Curious to the Max July 17, 2015 at 5:03 pm #

    Interesting questions you pose Carolyn. I definitely advocate “I’m fine” with strangers and casual acquaintances. I’m on the fence when it comes to relatives and close friends.

    On the one hand I do not want to dwell on not feeling good, nor do people want to hear it. On the other hand, telling the truth (without details) helps others learn how to deal with what is real and hopefully, if they are ever in similar situations, won’t feel they have to always hide their own reality . . . which leads to feeling very alone.

    I do NOT like it when a friend or relative glosses over/pretends everything is fine, etc. It’s as if they are stronger than I am and I NEED protecting – like saying “you can’t handle my reality” and that feels diminishing to me.

    I think what we say should be truthful and how we behave should exhibit fortitude, humor and as much dignity as we can muster at the time.

    (I had a client who used to routinely answer “Not too terrible” and always with a smile!)

    Liked by 1 person

    • Carolyn Thomas July 17, 2015 at 5:47 pm #

      Such good examples, Judy-Judith… Yet here’s an example of why I do indeed often “gloss over” my symptoms to others: we’ve recently had an unseasonably relentless heat wave here on the west coast. Like many patients living with coronary microvascular disease (affecting the smallest blood vessels feeding the heart muscle), I suffer terribly during this hot weather. Whatever causes them, my solution to help address my worst symptoms during the heat wave was to cancel all outings and stay inside a darkened apartment hunkered down next to cooling fans, ice packs and lots of drinking water. But when I explained to a friend why I was cancelling our plans together one (blasting hot) day, her response was a dismissive: “Well, we ALL feel like that, too!’ – as if my explanation didn’t adequately satisfy her.

      Like

      • Curious to the Max July 17, 2015 at 8:22 pm #

        At my age, with my condition – in my world I would not consider her a “friend” nor would I want to spend time with her even when I feel better. It is besides the point for me whether my friends (or family) really understand or like how I handle my situation but they must be respectful of the choices I make and communicate with compassion.

        What little energy and time left here on earth I have I try to spend it with people who are supportive . . . . and easy to be with. From her dismissive response – she probably wouldn’t be one of them.

        Liked by 1 person

        • Carolyn Thomas July 18, 2015 at 6:05 am #

          All very wise points, Judy-Judith. But as the fridge magnet says: “Most people don’t listen with the intent to understand, but with the intent to reply.”

          Liked by 1 person

  4. MioMyo July 17, 2015 at 12:58 pm #

    Well, good question… My usual answer is also “Thanks fine”. Because my close ones know the truth and they usually see how I really am today, and do not ask questions. But sometimes a very confusing situation can happen if you always say “I am fine” and start to say this automatically. I had very close friends who were really offended by this. The last message from them was “You do not want us to help, make barriers between us because you NEVER say you REALLY need help”. I was not able to restore our relationship — they felt too offended.

    So, this is not a simple answer, like “yes, tell them” or “no complaints ever”. I think, all of us have a feeling deep inside, which hints when to tell and when to keep everything to yourself.

    Liked by 1 person

    • Carolyn Thomas July 17, 2015 at 5:14 pm #

      Interesting story about your friends’ reaction. You’re right that this is not a simple answer. I know what you mean about having that “feeling deep inside” that hints at when to tell and when not to – I try to pay close attention to that feeling. But I’ve also observed that many people seem NOT to have that “feeling” – they’d tell anybody within earshot about EVERY medical problem they’re experiencing!

      Like

  5. Isabella Quigley Moriarty July 17, 2015 at 4:30 am #

    Thank you for this article.

    I think the time to be clear is in the moment that action needs to be taken.. either you need to sit down and take the nitroglycerin…or sit down or stop and pay attention. That is honesty and that is truth. The ‘organ recital’ is already in the past. It works best for me to speak up when I need to care for myself. That can mean too if I know I need to/want to rest for a few days and be commitment-free socially, then I say so. Otherwise friends can think I am anti-them or anti-social when that is not the case. Genuine presence is a gift and is life-giving to me and others – at least that is how I get along.

    Liked by 2 people

    • Carolyn Thomas July 17, 2015 at 5:00 am #

      Isabella, I like that sentiment: “genuine presence is a gift”. So true.

      Like

      • Susann July 18, 2015 at 11:26 am #

        After my heart attack and heart block, I just chose to suffer in silence. Only my children knew of my ordeal. My son was with me in the ER and also when I had the pacemaker implanted. I tend to keep my bad days to myself. I get scared when I have angina at times, but I do keep the nitro with me. Mostly I’m trying not to focus on the bad and instead trying to walk every day and remain optimistic.

        This site is so supportive and helpful. Thank you.

        Liked by 1 person

        • Carolyn Thomas July 18, 2015 at 4:07 pm #

          Your important comment reminds me of what might be a valuable option that we haven’t yet mentioned, Susann. There is “suffering in silence” so as not to burden others around us, as you describe – and then there is talking to a professional counsellor/pastor/therapist who is trained to be understanding and supportive about what we’re going through when something as traumatic as a health crisis hits.

          This might be a good opportunity to remind readers: don’t hesitate to seek out counselling to help get you cope with such trauma.

          Like

          • MioMyo July 18, 2015 at 8:01 pm #

            I remember the quotation from Hemingway’s A Farewell to Arms:

            “You are so brave and quiet, I forget you are suffering…’

            So, it’s all in these words.

            Liked by 1 person

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