One beautiful afternoon, 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?
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?