by Carolyn Thomas ♥ @HeartSisters
I’ve come to learn that a common reaction to a heart attack is others’ utter shock that this could happen to “YOU, OF ALL PEOPLE!” Women in particular report reactions like this because, generally speaking, we’re used to being the strong glue that holds our family life and relationships together.
How dare we get sick. . . . . .
Dr. Wayne Sotile, in his very useful book Heart Illness and Intimacy: How Caring Relationships Aid Recovery, talks about the “family scramble” that can happen when somebody in that family is diagnosed with heart disease. Few things can heighten the family scramble, he claims, like the “wrong” family member getting sick.
Just who is the “wrong” family member?
Dr. Sotile suggests that, ironically, it may be easier in some families to adjust to a new cardiac diagnosis in a family member who already lives with another chronic condition. He gives the example of a family accustomed to dealing with the health problems caused by a husband’s alcoholism:
“If he now has a heart attack, the specific problems change, but the process of living with a husband with health problems simply continues. The shock of this cardiac diagnosis may be less than if he had never been sick before.”
But what if it’s the woman in this same family who suffers a heart attack, the one who has “never been sick”?
Dr. Sotile predicts that the rest of the family may now have greater problems coping when she is “temporarily unavailable to hold the family together in the face of escalating stress”. Family adjustment to this illness might be understandably challenged, especially if the freshly-diagnosed heart patient is healthier compared to others in the family. See also: When a Serious Diagnosis Makes You Feel Mad as Hell
Any time that an illness requires family members to make major shifts in how they relate to one another can be prime time for adjustment issues, according to Dr. Sotile. Both of my grown kids flew home immediately after the shocking news of my own heart attack, at which time our usual roles were dramatically reversed as they took over shopping, cooking and cleaning for their Mum. They just couldn’t believe that somebody who had been a healthy and active distance runner for 19 years was now an overwhelmed heart patient who needed afternoon naps. Dr. Sotile reminds us that people who are shocked by illness in their family, or are drafted into unfamiliar caregiving roles that they didn’t sign up for, often struggle to remain organized in ways that feel familiar.
For example, Dr. Sotile tell us that some families make one of two unhealthy choices when the “wrong” one develops heart disease:
1. DENIAL that the illness exists: both heart patients and family members sometimes cooperate in denying that anyone in the family has heart disease, or that the condition is as serious as they’re being told it is. They’re playing a game of pretending that the illness is not real. This dynamic may be due to the patient’s fear of the impact that open acknowledgement of heart disease will have on loved ones. (I could immediately relate to this unhealthy option, as I wrote about in When Heart Disease Wears a Smile. Our worried loved ones want and need us to get better. We know that, and will often become co-conspirators with them in pretending that we are).
2. GETTING SICKER than the patient: if the “wrong” family member gets sick, other family members may develop symptoms that require the patient to maintain a sense of importance and power in the family despite their heart disease diagnosis. Dr. Sotile calls this “one-downing” the heart patient. He cites research suggesting that family members of heart patients may even develop psychosomatic ailments that require medical attention. These ailments can result simply from the sheer emotional stress of dealing with a loved one diagnosed with a serious heart condition. See also: Oneupmanship: You Think YOU Have Pain?
For some female heart patients, just the fact that we are women may still be reason enough to make our families believe that the “wrong” person has been diagnosed with heart disease.
It was in the 1980s, for example, that the venerable American Heart Association launched its clearly male-focused ad campaign that reinforced the male heart attack stereotype by posing this question:
“If your husband had a heart attack in bed tonight, would you know what to do?”
And it was this same organization that, in 2016, issued its first ever Scientific Statement on Myocardial Infarction in Female Patients, reporting that women are significantly more likely to be under-diagnosed, and under-treated even when appropriately diagnosed, compared to our male counterparts. I can’t say what part of that scientific statement I found more upsetting: its appalling conclusions? Or the fact that it had taken this organization NINETY-TWO years to come up with an official statement about women? See also: Finally. An Official Scientific Statement on Heart Attacks in Women.
Other studies also support Dr. Sotile’s observations on caring for adult heart patients. We know, for example, that spouses who suddenly become caregivers generally report greater financial and physical burdens, more symptoms of depression and lower psychological well-being,1 especially when reported along with “physical and psychological exhaustion, lack of support from other family members, the patient’s degree of dependency, and their new role as caregivers.”
I learned a lot about family dynamics in Dr. Wayne Sotile’s book, Heart Illness and Intimacy: How Caring Relationships Aid Recovery – highly recommended for you and your family, too.
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1. Pinquart M et al. “Spouses, adult children, and children-in-law as caregivers of adults.” Psychol Aging. 2011;26(1):1-14.
♥
Q: How shocked was your own family by your cardiac diagnosis?
NOTE FROM CAROLYN: I wrote much more about how families respond to a new diagnosis of heart disease in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your nearest library or local 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 30% off the list price)
See also:
Turning “Why me?” into “Why not me?”
Looking for meaning in a meaningless diagnosis
Why hearing the diagnosis can hurt worse than the heart attack
How we adapt after a heart attack may depend on what we believe this diagnosis means
Heart Sisters 
Thanks Carolyn… as ever, great column on a great topic… but what if the woman heart patient doesn’t get the spousal support, or gets it with lashings of resentment on top, or has her husband/partner leave home on grounds of needing his own life?
Not every spouse/partner is prepared to be a caregiver… some marriages end… and the ‘Mom’ patient has to carry on raising kids as a single parent as well as trying to live life with a health deficit… is it the ‘wrong patient’ getting sick, or ‘wrong spouse/partner’ full stop?
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Excellent questions all, Pauline! There’s an old saying among marriage counsellors about what tends to happen when chronic illness hits one of the partners in a marriage: “Men leave, and women stay…” Men are far more likely to say, “I didn’t sign up for this!” – what happens when we teach our men that we ARE the glue that will hold the family together under all circumstances, until we can’t.
There are exceptions, of course – countless caring husbands who are loving caregivers, but whenever I write about the link between heart disease and bad marriage (here, here, or here, for example), I get an earful of stories just like your example.
I’m often surprised in fact by how some women actually defend their hubbies who are quite clearly mean and self-centred jerks (“but I can’t leave him because we own this property together…”) and yet I’ve also heard from many heart patients who told their jerk husbands to get out because they realized that it was dangerous for their heart health to stay with jerks, while at the same time teaching their daughters that this is what women must tolerate from men.
Some women simply cannot leave for many reasons, yet some have told me that leaving a husband who treats them badly was the best decision they ever made – even as a single Mum with a cardiac condition. Statisticians tell us that there is almost always a significant financial cost to women who leave, but on balance, is it better to save your own mental health or to continue to volunteer to be abused or neglected for the money?
In a perfect world, as one physician said brilliantly, women would choose spouses not because they like long romantic walks on the beach, but because they’re the kind of man who sits endlessly in a hospital waiting room holding her purse.
Thanks so much for your comment today. Take care, stay safe. . . ♥
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Thanks for another great post Carolyn — it made me think of a man who came to my cardiac support group just once. He had had a heart attack despite the fact that he was extremely health conscious — in amazing physical condition, didn’t drink or smoke, ate a healthy diet, worked out every day, etc. It was such a shock to his friends and family that one friend visited him in the hospital and gave him a bottle of whiskey and a carton of cigarettes, saying “Well if the healthy lifestyle didn’t keep you from a heart attack, you might as well indulge!”
In my case, my sons were grown but my daughter was a teenager and we were homeschooling at the time — she was the child I homeschooled all the way through. I didn’t have a heart attack but received a stent and then a second stent a year and a half later, I think narrowly missing heart attacks both times.
We were about to start her senior year when I got the first stent. I was leading a large support group of homeschool families, and there were many other stresses in my life as well. I knew I couldn’t continue like I had been, so I stepped down from support group leadership and enrolled my daughter in community college for her senior year. For me it was a great solution. It’s an option in NYS for finishing homeschool and our local community college even had a special program for high school students with reduced tuition for online courses.
She was able to get the basic required subjects out of the way and even some fun stuff for electives (ceramics and guitar!) and ended up with 25 college credits by the time she graduated. But apparently, although she never told me how she felt until much later, and although she earned straight A’s, it caused her a lot of stress and anxiety and she resented doing it.
I felt bad for not being able to finish with her the way she wanted to, but there was no choice for me. Her dad and I helped her as best we could while I spent the year doing cardiac rehab and losing a lot of weight. I thought of it as “The Year of Me.” (She is now 23 and on her own and doing very well — I guess she survived okay.)
As homeschooling moms we heard talks on taking care of ourselves at every annual convention — especially using the example of the oxygen masks on planes that fall down when needed. I heard it over and over again — “Put on your mask first, then take care of your child.” A great analogy for every mom, especially those of us dealing with cardiac issues.
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Thanks for sharing this unique perspective, Meghan. I wonder if homeschooling mums as a group tend to be even more selfless and focused on “others” given that they must be parents, teachers, social convenors, and in your case, group facilitators, always willing to jump in to be helpful, creative, productive, etc. despite your heart condition.
But if women cannot/will not put their own urgent needs as a high priority, what are they teaching their children? That mothers must be slaves to those children? Will their girls grow up believing that they too will never be able to take time for themselves as adult women if their kids’ wishes or preferences always come first?
Your daughter may not yet get this, but you did your daughter a big favour, despite her resentment of that college year. Not only is she doing “okay” now, but I’m guessing she is a far more mature person compared to how she would have been without that college year. You taught her that women need to pay attention to their own health first – yes, even if teenagers “resent” this big change in their mother’s duty to serve.
A great story – thanks again… Take care, stay safe… ♥
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It may sound strange but I think I was lucky that the culmination of my cardiac issues that lead to my early retirement/disability and later surgery all occurred after I was divorced and my kids were living on their own.
I knew I could count on them for minimal assistance and they knew I was determined to figure most of it out on my own. (both children had mental health issues).
Why do I feel lucky? Because I WAS the glue that held every thing together and the chaos that would have ensued probably would have convinced me to get out of bed and do things I shouldn’t be doing.
Years before any heart problems I came down with a terrible version of flu while at a state nursing conference. I was so nauseous and dizzy, I got a hotel room to lie down in and called my husband to pick me up because I couldn’t drive. When we got home I went directly to bed and slept on and off.
At one point I remember waking up and my then husband was standing over the bed just staring, waiting for me to open my eyes. When I finally opened them he said “I guess this means you’re not making dinner tonight?”
Need I say more???
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Good point, Jill – big difference between young kids still at home and grown kids living on their own! I had the latter, thank goodness – so didn’t have the same issues of dealing with younger kids. Mums with young children will drag themselves out of their sickbed to shop, make meals, do the housework, feed the baby, drive the kids to school, and other things that, as you say, they shouldn’t be doing while recuperating. My two adult children were however the ones suddenly affected by our (temporary) reversal of roles.
I had to laugh at your story of your hubby’s dinner question. I too once had a “what’s for dinner?” question aimed at me by a clueless husband, at that time a grad student while I worked two jobs. Unfortunately for him, it was at the end of an exhausting workday, after which I missed my bus home in a SNOWSTORM, thus walking all the way home, half-frozen and very late. I arrived to find him all comfy/cozy in his La-Z-Boy, reading the paper, smoking his pipe, looking up at me to ask impatiently (because he’d been waiting for me so long): “WHAT’S FOR DINNER?”
That was the last time he ever dared to ask me that question after I *enlightened* him…
Take care, stay safe. . . ♥
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1. Have your heard about about using the Kardia Mobile device to detect coronary microvascular disease episodes?
2. I was wondering if you have ever been able to detect your MVD episodes on a holter monitor?
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Hello Carol – I’m not a physician so cannot specifically answer your questions, except to say generally “No” and “No”.
My understanding is that Kardia is approved only for detecting heart arrhythmias. The Holter is a 3-lead EKG taken over a longer period of time (compared to the basic 12-lead EKG that’s considered the gold standard of monitoring heart activity – yet does not specifically identify MVD episodes.
Take care, stay safe. . . ♥
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The Kardia can detect afib, pvcs, tachycardia and bradycardia it CANNOT detect ischemia whether major vessel or micro vessel.
There may be a coincidence that the ischemia causes a rhythm disturbance which a Kardia picks up but there is no way to know that it is/was ischemia causing the arrhythmia without further testing.
( RN Kardia owner)
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Another great post. I have a question for you. It’s been almost 6 months since they fixed my aneurysm. The sternum scar looks great, but it still itches, especially at night. I have mentioned it to a couple of people and they seem to think it is normal and the nerves growing back. Did you have long term itching/tenderness in the area of your incision?
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Hello again – itchy scars are very common (and very annoying!) Surgical scars are often deeper than the average skin injury, and because more damaged nerves are healing, itching can persist. Apparently a scar is considered an “old” scar after two years, so yours might still be considered relatively new. There are a number of remedies that might help up to that two-year point. Good luck!
Take care, stay safe. . . ♥
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Further to the itchy scar thing. I had aneurysm repair in 2017. Persistent itching will stop. Gentle application of body lotion will help soothe it. Four years on, the only time it itches is when I take my bra off at night and … how shall I say it? … things “settle”. Everything is put right by a good scratch of the skin down each side of the scar!
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Thanks for your reassuring response to OlderRunner2, Deborah! Apparently cocoa butter or coconut oil work particularly well to address skin dryness to ease itching. Take care, stay safe. . . ♥
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Thank you for the response. This was my first surgery, so I have no idea what is common and what isn’t. LOL
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Soon you’ll be an old pro offering tips to newbies! ♥
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Thanks.
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