by Carolyn Thomas ♥ @Heartsisters
I once heard the late author Dr. Leo Buscaglia tell a conference audience his story about how he grew up equating caregiving with love. When he was a little boy, for example, his own mother seemed cold and distant – except when he was sick. During those times, she would sit at his bedside, stroke his fevered brow, spoon-feed him homemade soup, fuss over every painful twinge, listen carefully to his every word, and become the kind of loving mother he rarely knew when he was healthy. .
Those were the only times Dr. Buscaglia remembered feeling truly cared for. So when he grew up and married, he was shocked by his new wife’s behaviour toward him whenever he got sick!
Instead of brow-stroking and soup-spooning as she was supposed to do, she seemed to have zero tolerance for his sickly ways. She didn’t hover over his sickbed, didn’t offer to bring him special things, and seemed annoyed by his weakness – until he felt well enough to be up and around again, at which time she resumed being her usual loving self. (And coincidentally, whenever she got sick, she wanted only to be left alone). See also: What’s Your ‘Being Sick’ Style?
Trouble is, as Dr. B. learned, not everybody receives or offers the same support and consideration that WE would prefer during an illness.
Yet, as I know from both my “Heart-Smart Women“ presentation audiences and responses to my Heart Sisters blog posts, most of us seem to have specific if unspoken expectations of how our friends and family should rally around us during a health crisis.
Many times, we are pleasantly surprised by who does step up to help as often as we feel disappointed by who doesn’t.
An unmet expectation is often expressed like this:
” I felt so disappointed that my ______ (insert one: friend, sister, daughter, spouse, mother) was not there for me!”
This seems especially common in women who see themselves as the kind of friend/sister/daughter/spouse/mother who would readily drop everything to help others if the tables were turned. They sometimes mention specifically that they are the helpers who can be unfailingly counted on to offer an empathetic shoulder to endlessly cry on.
So when it feels like these helpers receive less understanding in return, it can really hurt. “But I would do this for YOU. . .” becomes their silent inner protest.
This is why I now advise women in my audiences and on this blog to choose carefully the people you decide to confide in.
Spouses, siblings or grown children, for example, may appear at first blush to be the most logical people to count on when we need to express all of our fears, worries, symptoms or needs after a serious diagnosis like heart disease.
For some families, this works out just fine.
But in other families, this is not always an accurate assumption.
Surprisingly, in fact, those closest to us might actually be the least appropriate listeners once the acute illness crisis stage has passed.
In the early days following any freshly-delivered diagnosis, we’ll tell and re-tell our story to anybody and everybody. Each visitor/caller asks the same worried questions, and gets the same story. It’s often how we process and debrief what’s just happened.
In fact, many heart patients have told me that they initially felt so overwhelmed that they would tell their story to just about any warm body who asked, “How are you doing today?” After my own heart attack, nobody was safe from me and my dramatic story of misdiagnosis and survival.
If this goes on and on, however, and especially with a chronic illness, it’s called ruminating. In my book A Woman’s Guide to Living with Heart Disease, I cited the research of the late Yale University professor Dr. Susan Nolen-Hoeksema, who warned about the inherent problems with longterm ruminating.(1)
As she explained, ruminating can have a chilling effect on the willingness of others to keep listening:
” Friends and family might respond compassionately at first, but this compassion can wear thin over time. Ruminators report reaching out to others for help more than non-ruminators do, but ironically can end up receiving less of it. Instead, some ruminators report that others tell them to buck up and get on with their lives. After a while, other people may become frustrated and start pulling away, which gives ruminators more to ruminate about: ‘Why are they abandoning me?’“
I suspect, however, that there’s another possible reason others pull away, and that’s simply because we tend to turn immediately to those who may actually be least able to hear: our family and closest friends.
But what so many of these people actually want – and need – is for us to be better.
They want and need to know that our frightening health crisis is over now.
They want and need to be able to stop suffering with worry.
In cardiac psychologist Dr. Wayne Sotile’s excellent book Heart Illness and Intimacy, he offers sound advice to the spouses of heart patients:
” Spouses may feel overburdened with responsibilities to be all things to all people, often drifting into exhaustion from trying to be the family’s emotional cheerleader, the family dietitian, the medical liaison between patient and doctors, and the patient’s conscience about new health care habits, all at the same time.
“A useful guideline for families: do for the sick family member only what that person cannot do for him/herself, and no more.”
He adds communication advice for the heart patient, too:
“You should not feel alone in dealing with the fears of this journey, but neither should you demand excessive ‘rescuing’ from your mate.
“Be honest with yourself and with each other about what you need from each other. “
It’s not that we have to keep everything to ourselves.
It can be very helpful to debrief a traumatic medical event and talk about how it’s affected us and what it all means. Sometimes, however, no matter how much we try to process it, we won’t figure it out. See also: Looking for Meaning in a Meaningless Diagnosis
And as psychologist Dr. Guy Winch, author of the book Emotional First Aid, once cautioned:
“Venting doesn’t always bring you relief. The listener makes a big difference.”
He offers five important questions to ask yourself about any potential listener – close to you or not – before you decide if that person is the right one to share what you’re going through:
- Is this person a good listener?
- Is this person supportive?
- Can this person offer empathy and emotional validation?
- Is this person likely to shift the talk to be all about them?
- Is this person loyal?
So, for example, do not expect that the person you know will highjack any conversation into a long story about themselves will suddenly turn into an empathetic listener just because you’ve had a serious health crisis you want to talk about.
To even expect that sudden transformation is to invite disappointment.
Instead, it’s far smarter to make an informed choice about who you’re going to trust with such sensitive personal suffering. It’s okay to choose NOT to confide at length in certain people. It’s okay to just say “Doing better, thanks!” when asked how you’re feeling. See also: “I Don’t Want to Talk About It”
What can you do if you don’t have a good listener who fits the bill?
Please do not despair, and try not to blame family and friends around you for letting you down. That’s like blaming a brown-eyed person for having blue eyes. This is quite often less about you than about THEM – and how they view a frightening diagnosis.
Consider instead seeking talk therapy (something that absolutely saved my own sanity) especially if you are depressed; this can also be with a professional therapist, a peer counselor, a pastor, or a trained community help-line volunteer. Start a daily journal to write out your thoughts and struggles. Sign up for a cardiac rehabilitation program if you’re newly diagnosed. Join a patient support group for others diagnosed with a similar condition (either an in-person or online group – like Inspire’s WomenHeart Connect, a support community with over 40,000 other women worldwide living with every possible form of heart disease. It’s free to join, open 24/7, and you can participate in discussion topics or ask questions as much or as little as you like.
As Toni Bernhard, author of a useful book about chronic illness called How to Be Sick, once wrote:
“ Remember that people’s abilities or lack thereof are not about you; they reflect their own life history and perhaps their own fears about illness. I used to get upset when people didn’t behave the way I thought they should. Then I realized that getting upset about it only made me feel worse.
“I feel better emotionally when I graciously accept whatever support is offered and let the rest go, including my views about how people should act.”
♥
1. Nolen-Hoeksema, Susan. Journal of Personality and Social Psychology, JPSP 2005 (Vol. 77, No. 4, pp 801-814).
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Q : Who have you decided are the most appropriate people in your life to confide in, and why?
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NOTE FROM CAROLYN: I wrote much more about both getting and offering support 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 30% off the list price).
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See also:
Scope creep: when NO means maybe, and maybe means YES
The new country called Heart Disease
The bumpy road between diagnosis and getting better
Why hearing the diagnosis hurts worse than the heart attack
Recuperation and a red leather chair
How we adapt after a heart attack may depend on what we believe this diagnosis means
Which one’s right? Eight ways that patients and families can view heart disease
Surviving the crisis: the first stage of heart attack recovery
Post-Traumatic Growth: how a crisis makes life better – or NOT
Heart Sisters 
Going on 22 years of heart problems erupting, rushing to hospitals, treatments, rehab and adaptation.
As exhausting as it’s been for me, it has exhausted family and friends. My condition is failing. I’ve learned from my friends and family that I have to be careful what I say. Those who love me want good news, need good news.
The expectation is that I will work to get better and recover. That is not what will happen with my heart. It will fail. No transplant, too frail. No pump, they are too frail… but maybe technology will improve in time.
I am sad. But my spirit is still strong. Being a patient with a chronic illness is daunting work.
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Hello Mahjo… What you’re describing is important, and so hard to comprehend for those people whose only experience with “illness” is in acute care. For them, a “good patient“, as I like to say, is one who gets sick, gets treated, gets better – and then thanks their brilliant doctor!
SO different than for those of us living with a chronic and progressive illness diagnosis, for whom it’s more like just putting one foot in front of the other each day. And through all of this, as you so correctly say, we try to be so careful what we say to our loved ones.
Hang in there… Thanks so much for sharing your perspective.
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Hi Carolyn,
The article was very nice, but has very little to do with me. The only person I ever expect to listen to me is a doctor treating me. I learned a long time ago not to expect anything from any one but myself. The less people know about me the better and most people would be better off if they didn’t look for understanding and comfort from others.
Robin
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Hi Robin – Your last statement (“Most people would be better off if they didn’t look for understanding and comfort from others”) is actually not accurate. We know from decades of research that people with supportive relationships do have better physical and mental health than those without. This particular article (which may have very little to do with you) is addressed to help those who are seeking “understanding and comfort” from people who, for any number of reasons, are unable to offer it.
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Well, here you go again, Carolyn, bringing up a subject that has recently knocked me between the eyes.
When I was diagnosed with my thoracic aortic aneurysm, I had enough time before surgery to consider who, in my family, would be most physically and emotionally supportive during my post-operative recovery. I’d already done lots of ruminating and, while I didn’t like this fact, I knew my husband would likely need to pull back his emotional support at some point and I didn’t want that when I needed it most. (He did withdraw at one point, but he was back in supportive mode after about a 24-hour “rest”.)
So to be on the safe side, I asked a sister and sister-in-law to be here for me. They were and they were wonderful.
It’s only recently, when I heard my sister-in-law describe her experience to a mutual friend, that I realized how deeply my situation had affected them. The three of us were having lunch in a restaurant. Our mutual friend commented on how well I looked and seemed to be doing. My sister-in-law held up a sickly butter-yellow menu and said “She used to look like this.”
That prompted me to thank her all over the place for her ongoing support and to express my gratitude to my sister one more time too.
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Hello Deborah – a couple things leaped out at me while I was reading your story. First, “I knew my husband would likely need to pull back his emotional support at some point”. This is brilliant (not because of the withdrawing, but because it shows that you know this guy, and that you have a completely realistic expectation of what he’s able to do. Second, you had enough time before major surgery to really think about who would be your most appropriate supporters post-op – and then you had the time to ask them first. And you chose wisely, seems like!
How lucky you were (not that your diagnosis was lucky, of course!!) that you had that time and, more importantly, the presence of mind to anticipate your upcoming needs AND the people who would be most able to help you meet those needs.
And another thought I had was how even your sister and sister-in-law didn’t really know for sure what was actually going to be involved when they agreed to be your supporters, or how that level of involvement might affect them.
When faced with that uncertainty, it seems that saying YES to such a profoundly important yet non-specific request has to be based on a pure gut feeling that they would somehow be able to manage whatever came up. No wonder you felt so grateful for that kind of help!
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I encountered an unexpected source of support this week as I was starting my exercise in the cardiac rehab gym.
A trainer asked if I was willing to be interviewed by a professor of pharmacology who was there with two senior pharmacology students. When I said I had angina from coronary microvascular disease, she launched into teaching the students. She talked about the condition, the lack of research because it primarily effects women. She told me it has recently been renamed INOCA or Ischemia and No Obstructive Coronary Artery Disease.
After encountering health care providers that say I don’t have a cardiac problem because the tests don’t show obstructions, I felt so relieved to be heard and validated.
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WOW! I love that professor! And for you to experience that validation from a stranger (an EXPERT stranger, even better) WITH WITNESSES! Heard and validated in one moment!
Thanks Sara for sharing that terrific example of unexpected support.
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When I had my stroke on Memorial Day weekend of 2018, my brother and my future sister-in-law’s (#2) wedding was already planned for early August of the same year. My brother and I are super close and as both our parents had passed, he asked me to walk him down the aisle.
I spent 5 days in a medical hospital and 3 weeks in a sub-acute rehabilitation facility. I was in constant contact with my brother, but not a word from my future sister-in-law who I knew at that point since 2015, when my brother and she started dating. Not a phone call, not even a text asking how I was doing.
The first communication I received from her was in fact a text (because I had failed to send in my RSVP for the wedding). She texted me to ask if I wanted the steak, the fish or the vegetarian selection for dinner at the wedding. I was so hurt.
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Good grief, Andrea!
So… I’m guessing your sister-in-law would NOT be on your list of the people who are appropriate to turn to during a personal crisis…
(Are they still married?!?!)
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Yes, they just celebrated their 1st anniversary!
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Well, there you go. She must have many redeeming qualities that your brother appreciates… ♥
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What great advice! I think we may all slip into this muddy pit at times (becoming a ruminator)…well, I know I have. Finding others who truly understand the health issues we deal with can be a Godsend! Thanks, as always, for putting your finger on a real issue that crosses many areas of chronic illness.
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Hello Barbara – I hear ya! I have the tendency to become a world champion ruminator! A friend of mine with the same tendency to ruminate once told me that she says to herself (and sometimes even out loud!) the word “CANCEL!” to help interrupt/shock her out of that downward spiral. Just that word can often work! Thanks for your comment here.
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Carolyn, once again your writing is on point! This post particularly resonates with me and its timing is impeccable.
I’m a family member of a SCADster and although I’ve researched the bejesus out of it (pouring over medical journals as the condition has been severely overlooked by the medical profession & media until very recently), I still worry that I’m not doing enough to help my family member improve her quality of life and prevent recurrence.
The trouble is, I’m kinda trying to control the uncontrollable, to make sense when there is none etc. Thanks for the reminder that I need to pull back a bit more, be careful not to overload other family members, and to take time to look after myself.
The SCADster is, overall, doing well. Not climbing a mountain or being a CEO or any BS like that, but 11 months on, living her life the best she can after surviving an unexpected & highly traumatic experience. She’s still a mother, sister, friend, dog whisperer, and quick with a quip. In short, she’s more than a patient and sometimes that needs emphasising.
Thanks for the blog and the book.
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Thanks for that family member’s perspective, Suzta. We focus so heavily on the patient, patient, patient that sometimes family members feel ignored. That’s why I love Dr. Sotile’s book – it’s ALL about the family (and not just spouses).
You raise some good points – about the patient still being the person she always was, and especially about the need to take care of YOURSELF!
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After 20+ years dealing with A-Fib and A-flutter and undergoing three cardiac catheter ablations, I’ve learned I don’t want to participate in “Ain’t It Awful” competitions with a certain family member.
This person, who fancies themselves an amateur medical diagnostician, had minimized my heart issues for years.
The final straw (aka “lightbulb moment”) occurred after I had a bike accident at 20 mph, caused when two heart medications made me pass out without warning. I was taken by ambulance to the local trauma center where I was cleaned-up, stitched-up, and treated for a concussion.
A few days after the accident, I called the family member to let them know what had happened and that I was recovering. Their response was a sharp inhale, followed by “Well, now both my knees hurt.” The family member continues to treat me to regular and voluminous “organ recitals,” to which I mostly just listen.
Fortunately, other relatives, friends, and folks in two online AF support groups provide emotional support.
Another lesson I’ve learned as a result of my heart condition is not to overshare health issues, including with health care providers. No self-aware person wants to be considered a whiner. Limiting “organ recitals” makes an actual health issue more likely to be taken seriously and helps maintain good relationships.
Lastly, if you have Netflix, check-out the new 7 episode mini-series “Diagnosis.” It’s based on the New York Times column of the same name written by Dr. Lisa Sanders. There are many references throughout the series to doctors telling patients, especially women, that their symptoms are all in their heads. To many of us, that rings a bell.
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Good grief! First of all, I’m glad that you survived what could have been a catastrophic bike accident!! Second, terrific point about the dangers of “over-sharing”!
That relative of yours, the amateur diagnostician who minimized your symptoms “for years’, is a person who should never be told anything about anybody else’s medical concerns – because such concerns only serve to remind a person like that to interrupt with something far more fascinating about their own health, over and over.
That reminds me of my granddaughter, who – when I told her last week that my back was very sore – told me that HER back was also very sore – and that what I should try doing is jumping up and down “like this!!!” Her very animated two-footed jumping demo made me laugh out loud. The difference – that kid is just four years old so you can expect that she’ll grow out of that reflexive “You think YOU have pain!?!? Let me tell you about MY pain!” response. (I hope!) Your relative, sadly, will not.
I think you’re pretty saintly to remain in the same room when this relative gets started on the organ recital! I have SO little tolerance for that….
I don’t have Netflix at home, but I’ve already read some great reviews of “Diagnosis”. Speaking of films about women and misdiagnosis, watch “A Typical Heart” (about 22 minutes).
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