by Carolyn Thomas ♥ @HeartSisters
When you get together with your girlfriends, are there any conversation topics that you believe are not open for discussion? Any that are off-limits? Any personal stories that you think are, well, just too personal to talk about to those women closest to you?
No, me neither.
Nowhere is this communication openness more visible than with our health. We generally like to share our medical news, updates on that medical news, and our opinions about each others’ medical news. Health topics appear increasingly popular as we age (and thus have way more medical news to discuss). It’s what my friend Dave likes to call “the organ recital”. But when it comes to serious health conditions, do you ever wonder if all that sharing is necessarily a good thing?
Immediately after I survived what doctors still call the “widowmaker” heart attack in 2008, every detail of my story, every symptom, diagnostic test, cardiac procedure, chart note and “what the cardiologists said” seemed to spread like wildfire among my girlfriends. By the time I was discharged home from the CCU (the hospital’s cardiac intensive care unit), everybody I knew, near and far, already seemed completely up-to-speed on my whole story.
Linguist Dr. Deborah Tannen described this wildfire communication phenomenon beautifully in her must-read book on communication called You Just Don’t Understand. It’s so good, in fact, that you must now stop reading this and go buy this book (preferably at your small family-run local bookshop and not from an online mega-site) – and then come right back here!
For example, Dr. Tannen’s linguistic studies suggest that women tend to communicate in order to connect emotionally, to express feelings, or build rapport with others. (She also found that when men communicate, they generally tend to share facts and figures, as if in a report).
Dr. Tannen cleverly labels these gender-based communication style differences as “rapport-talk” and “report-talk”.
And is there any topic more important to creating that rapport for women than sharing with our friends the dramatic stories of serious medical diagnoses or health crises?
But recently I read a compelling argument for NOT sharing quite so much. It was written by a woman named E. Amato, who describes herself as a “dulcet-toned poet, spoken word artist, activist and filmmaker”.
She tells a story about experiencing three social outings in four days – which sounds like absolutely no big deal if you’re lucky enough to enjoy the luxury of “healthy privilege“.
But for her, living with chronic pain and other debilitating symptoms, this social schedule was more than she’d even attempted in months. A very big deal indeed. Besides just navigating the exhausting travel requirements to and from each outing destination over those four days, she also knew that catching up with three groups of friends she hadn’t seen in a long time meant updating her story for each one again and again with nary the smallest detail left out.
After the end of the third social outing, she collapsed back at home – the beginning of a medical relapse that would last for many weeks, as she describes it:
“My body was done. I was depleted, mentally and physically.”
It struck her after she started to feel better that the culprit seemed to be in that repetition of those medical updates at each of three separate visits. She explains:
“What I thought I was doing was sharing. Our culture encourages sharing. This is why we have friends, and when they get bored of us, talk therapy. This is why we develop support networks.
“The idea that talking about it is the cure seems to be fairly pervasive. We ‘shine a light’ on hidden issues, we ‘air them out,’ we ‘come clean,’ we ‘get things off our chest.’ All of these idioms show the high regard we have for employing narrative as a cure.
“What if it’s not? What if talking about it makes it worse?
“I was aware of the perils of possible over-sharing with strangers, but it should be different when I tell supportive people close to me the events and details of my life.
“It is different. It’s worse.”
She now believes that repeatedly telling her story may actually cause her to relive the original pain. If an emotional trauma is linked to a physical one, she says, or if somehow they have linked themselves together in her body, she may actually be summoning them back into action. When such self-disclosure happens during this kind of conversation, this is how it feels to her:
- she’s putting her systems on high alert
- she’s triggering inflammation
- she’s triggering the fight/flight response
- she’s triggering shutdown mode
In other words:
“Talking about pain and trauma can actually cause pain and trauma. The truth is, sometimes talking about it is self-harm.”
That sentiment is also what Nova Scotia’s Dr. Barbara Keddy believes. She’s the author of Women and Fibromyalgia: Living With An Invisible Dis-ease and has herself lived with fibromyalgia for over four decades. As if that’s not challenging enough, she’s also a heart attack survivor.
She writes, for example, about a support group of Toronto women also living with fibromyalgia who get together regularly – not, as you might expect – 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.”
The question for many of us, however, is how to NOT share important updates about one’s health with those who care about us.
Can we join our friends for lunch at the pub on Saturday and suddenly refuse to answer their questions?
Should we announce that from now one, no further medical updates will be forthcoming?
Should we default to the standard “Fine, thank you!“ smiley-face conversation stopper instead?
As I wrote about in How Our Girlfriends Help Us Get Through the Toughest Times, social scientists tell us why so many women instinctively talk about what’s going on for us so freely compared to the men in our lives.
In 2009, a landmark UCLA study found that women respond to severe stress (such as going through a serious health crisis like a cardiac diagnosis, for example), with a cascade of brain chemicals that cause us to seek and maintain friendships with other women.(1)
Researchers used to believe that when we experience severe stress, both men and women trigger a hormonal cascade that revs the body to either stand and fight, or flee as fast as possible, explains Dr. Laura Cousin Klein, one of the study’s authors. This is the ancient fight-or-flight survival mechanism left over from the time we were chased across the planet by all those sabre-toothed tigers.
At least, that’s what happened to men.
But Dr. Klein and her team found that the credit for women’s unique stress reactions may belong to the hormone oxytocin (also known as the “love hormone”). It’s the body’s own wonder drug – released when we nurse our babies, for example, as well as during a woman’s stress response. It’s instinctual, it buffers the fight-or-flight response and it encourages us to tend children and gather with other women instead – what’s called our tend-and-befriend response to stress. This calming response does not occur in men, says Dr. Klein, because testosterone – which men produce in high levels when they’re under stress – seems to reduce the effects of oxytocin. Estrogen seems to enhance it.
Lisa Genova, author of two of my favourite novels (Still Alice and Inside the O’Briens – the latter I’ve been both laughing and weeping through all weekend) recently wrote of confiding in a person she hardly knew. The woman happened to ask her during a kids’ birthday party a simple question: “How are you?” But instead of replying “Good!”, Lisa surprised herself by confiding in this stranger some painful details about the divorce she and her husband were going through. The woman shared her own remarkably similar divorce story, and the two eventually became close friends. Lisa explains:
“I realize we can’t open ourselves to every person we sit next to on a bench, or stand behind in line at Starbucks. Sometimes a smile and a ‘Good!’ are the best we can offer and all there is time for.
“But sometimes, ‘How are you?’ can be an opportunity to reveal some of what is genuine inside our carefully dressed and armored exteriors and to be seen, down to our complicated truths. It invites the possibility of a connection with another human being.”
So rather than toss those natural tend-and-befriend instincts, let’s consider how we can modify our medical updates if we, like Amato, suspect that such updates may be leaving us drained and exhausted.
- pick and choose carefully who to say what to (you don’t need to repeat every detail of every doctor’s visit to every casual acquaintances)
- as Rev. Debra Jarvis advises: “Claim your experience. Don’t let it claim you. It’s never too late to become someone besides simply a survivor.”
- try not to interrupt someone in the middle of sharing their serious medical news update to tell them your own far more fascinating story (that’s just plain rude)
- even with close friends or family, decide which bits to talk about and which to keep to yourself
- you’re allowed to have private and personal thoughts
- you’re also allowed to share these – but again, choose your target audience wisely
- practice not going into any detail about your latest medical update just because people ask about it – just to see how that feels for you
- if something is overwhelming for you, consider making an appointment to talk to a therapist, pastor or professional counsellor (talk therapy can often be very helpful, particularly in the early days post-diagnosis to gain perspective on what’s just happened)
.
1) Biobehavioral responses to stress in females: Tend-and-befriend, not fight-or-flight. Taylor, Shelley E.; Klein, Laura Cousino; Lewis, Brian P.; Gruenewald, Tara L.; Gurung, Regan A. R.; Updegraff, John A. Psychological Review, Vol 107(3), Jul 2000, 411-429.
NOTE FROM CAROLYN: I wrote more about sharing – and not sharing – details of a serious health crisis in my book A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press). You can ask for it at bookstores (please support your local independent bookseller!) 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).
Q: Which feels better for you: sharing your medical news with friends and family, or choosing not to?
See also:
Sharing our health struggles: too much, or not enough?
Good news: your story is not yet locked in
How our girlfriends can help us get through the toughest times
Get over yourself: how to stop boring others with your heart attack story
The loss of ‘self’ in chronic illness is what really hurts
.
Heart Sisters 
I did some research on my father’s Second World War experience. At the end of the war, the Canadian armed forces established a programme that advised families of the returning servicemen and women. The families were told not to talk to the returnees about their experiences and not to encourage their loved ones to talk about it. My dad, therefore, told the funny stories but never the bad bits. My mom was always decidedly uncomfortable when he did this because she thought he was “breaking the rules”. She certainly never brought it up. When I learned about this “re-education” programme, I thought this type of suppression was potentially harmful to these people.
After having read your article, I’m beginning to wonder if maybe they had a point.
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It’s so interesting that you should mention your Dad’s wartime experience, Deborah. We know that it’s very common for veterans to be reluctant to talk to their immediate families about the horror they endured in combat.
But recently, when I was researching Post-Traumatic Stress disorder for my fear of dying blog post, I found studies reporting that symptoms of “late-onset PTSD” began surfacing when veterans hit retirement age and left the workplace – often 40+ years after they’d been in combat. Researchers suggested that many vets are somehow able to keep things bottled up, stiff upper lip (as instructed) all those years because they’d been so busy working and raising their families – it was only with the unstructured open-ended days of retirement when they had the time to finally face what they hadn’t decades earlier. So it may be hard to determine if that armed forces programme was harmful or helpful at the time! Thanks for bringing this up…
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I don’t always “feel better” when I tell my story, but I do it because I want to make other women aware of our unique heart attack symptoms, the fact that we are often ignored by our doctors – and that the medical community is just beginning to understand differences between men and women when it comes to heart attacks. I feel an “obligation” to tell my story for those reasons. I think it also helps me adjust to the idea that it actually happened to me… it all seemed so surreal, especially in the beginning. It’s not quite a year and a half ago for me.
However, I also know I have to be very conscious of times I should not share it. Recently, I went to a family reunion and knew that I would be seeing many people I hadn’t seen since my heart attack, sudden cardiac arrest and open heart surgery. I also knew that if I told my story to each one of these people, I would be completely exhausted and wouldn’t enjoy the reunion. So I took care to not overdo it. And there were a few times I told a relative, “I’ll write more about it to you later – it’s kind of hard for me to talk about it sometimes.” That got me off the hook and still gave me a chance to talk to her later.
So for me, it’s a delicate balance… sharing important information when the time is right and knowing how to keep my emotions and internal reactions in check at the same time. I believe it can be done.
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Great examples of that balance you’re talking about, Bonnie!
The first case (helping to educate others) is what researchers like Dr. Al Siebert writes about. He’s the author of a terrific book called The Survivor Personality: Why Some People Are Stronger, Smarter, and More Skillful at Handling Life’s Difficulties. I think you would really enjoy his book. For example, he describes what certain kinds of “transformative” patients have in common:
1. They integrate the traumatic experience into their identity and make the experience a defining part of their life story.
2. They talk or write about the trauma in a way that is helpful to others.
More on this in Why We Keep Telling – and Re-Telling – Our Heart Attack Stories.
Your second case (protecting yourself from being overwhelmed with telling your story) is about self-care. Very important for heart patients!
Thanks so much, Bonnie! ♥
PS DEAR READERS: make sure you check out Bonnie’s Facebook group called Heart And Soul: A Forum for Women where you’ll find almost 400 members like you chatting about living with heart disease!
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Thank you so much, Carolyn! And I will definitely check out the book you mentioned.
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🙂
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Thanks once again Carolyn, for this great blog. What always delights me about your writings is how you incorporate the ‘psycho-social’ in your ‘bio-medical’ reflections and research. How could we possibly separate them anyway? But you are expert at it.
After my heart attack I had several encounters with women I barely knew who asked for great detail about my experience. I could feel my tension rising as I told them a bit briefly (then, of course, I referred them to your site).
However, I could “feel” their fear which increased mine! After telling a few close friends and family (and you!), I found myself quite bored with the story.
Several close friends e mailed me from afar to ask :“what’s the prognosis?”, which was almost even worse, as of course I wondered about that myself. Their question brought up my own anxieties so soon after the heart attack.
Given that fibromyalgia affects me daily more consciously and directly, and that this condition is caused by a chronically hyper-aroused central nervous system, I am more physically challenged with this syndrome than with heart disease. Therefore their questions (and my resistance to discussing what a heart attack feels like) stirs up the old amygdala and I definitely feel like fleeing from their questions. In most cases I told them to read about women and heart disease and that I didn’t want to rehash the experience (not quite in those words).
This past year I foolishly attended a presentation about fibromyalgia that lasted over two hours with only a 5 minute break. The room was filled with people who had this condition, seated on hard chairs. The presenter reamed off symptom after symptom which didn’t make much sense given we had all experienced them. I left feeling much worse than when I came. Information and/or support groups can be harmful if the focus is on gloom and doom.
My intent from now on is to read your blogs (ahem!), ask my family doctor or pharmacist, both whom I trust, and otherwise avoid groups that belabour negativity and instil fear!
I have two friends who have heart disease. Neither want to discuss the fears, anxieties, and other concerns associated with it, except briefly. One keeps up to date with your blogs. We don’t spend time talking about women and heart disease. Their choice. I respect that.
I really don’t want to describe my heart attack ever again. It happened; I learned a great deal from it; I may have another – so be it.
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Thanks so much, Barbara. So many thoughts swirling while I read your comments! (First, what the hell were the organizers/speaker at that fibromyalgia talk THINKING?) I’m also wondering if fibro and other diagnoses with debilitating chronic daily symptoms seem less high-drama to others than surviving a heart attack does – hence the questioning from others about your cardiac event, yet ironically making fibro symptoms worse. Heart disease is more frightening to contemplate, not surprisingly – but managing all that “contemplation” is so important to our emotional and physical health. Take care…
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I am facing a probable cancer diagnosis (being sent to a university medical system clinic). My husband told one person at work (at our church) so he could arrange for time off for my appt. Within a few hours, at least 6 people knew about it, including my best friend who was on vacation. I was so upset on so many levels, my head was spinning… Our son was on vacation, and we were waiting for him to return to talk to him. I was so afraid that he would hear through the grapevine (and we all know how news gets juicier as it gets told). I have a large family, too, and had to rush to tell them right away. I WAS EXHAUSTED! Wondering if the story is more interesting because of my heart issues…
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Oh, that’s tough – when we’re in a mad race to tell close family before they hear our news via the grapevine! Whether you had heart issues or not, a cancer scare is ALWAYS major news to those who care about you.
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You really woke up the masses with this post. We, the Universal We, must really need to talk about this. I was silent for so long about the physical and psychological abuse I suffered, bearing my trauma with no one but myself, that once I started talking about it, I never shut up.
But I’ve also discovered that: It didn’t heal me. It didn’t take away the experiences that hurt me. It caused other people to put distance between me and them. It scared the hell out of a lot of other people. Some people just didn’t believe me.
Now I have scientific reason to stop talking. I’ve told my story to everyone who needs to know (very few) and about a thousand who didn’t. It’s stuff that happened long ago. My best strategy for healing is to learn to forgive, and I am working on that. Should my best strategy become successful, I might have more friends who want to spend time with me. I sleep better. I have much to look forward to enjoying.
Thanks for providing information here. I’m going to think about this article every time I start to open my mouth, and then I’m going to close it.
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Thanks for adding such good points here, Sharon. My favourite was: “I’ve told my story to everyone who needs to know (very few)” – and once we’ve done that, they know. I think at the beginning, there IS a strong need to talk through traumatic events (as the studies suggest in this blog post) but it’s picking and choosing who to confide in that matters (e.g. not the thousand who don’t need to know).
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WONDERFUL post Carolyn. I was fortunate to learn long before I had medical “issues” that “retelling the tale” – ANY traumatic event – re-traumatises us neurochemically. (The brain does not distinguish what is literally taking place in the moment from what we visualize, think, talk about etc.)
Sometimes it helps to share my woe-is-me with close friends because I feel less alone. But I constantly catch myself thinking “poor me”, “I’m so exhausted” or “I feel terrible” etc. It’s hard not to focus on my physical condition, but I know that the more I do so the worse I feel.
Norman Vincent Peale’s The Power of Positive Thinking was ahead of its time!
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It’s SO interesting to read your comment Judy-Judith, because I know that your professional background is as a psychotherapist. How do you think the retraumatizing downside of “retelling the tale” jives with the inherent reality of psychotherapy – which is TALKING!? PS I read Dr. Peale’s wonderful little book as a college student and it had a profound impact on me!
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When I was in practice, once I got the “story” in detail in the first initial intake session, I would explain the science you described in your post. Subsequent sessions I would limit the “trauma retelling” (explaining over and over the science in subsequent sessions until the client fully understood), and focused on strategies (cognitive & behavioral) that minimize or curb the release of the neuro-chemicals that trigger stress response.
One of my first positions in 1985 was in rape-trauma and it was apparent early on that how I was trained to “help” by rehashing the trauma made it worse. That’s when I started researching.
Unfortunately, many therapists do not keep up with the brain research and adhere to the notion that people need to talk and talk and talk. It keeps people in therapy and pays the therapist’s bills, but doesn’t help clients.
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Thanks for that explanation. I often recommend talk therapy to heart patients, particularly in the early days/weeks when most are still reeling from what the hell has just hit them, but I realized while reading your comment that the part of talk therapy I value so much from my own experience with professional counselling is just what you describe: moving from the “story” to practical coping/moving on strategies. Thank you!!!
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I have the same issue. Each time I am encouraged to talk about my Takotsubo heart attack, I find myself experiencing fluttering of my heart, pressure in my neck and my blood pressure soars even though I take a calcium channel blocker (amlodipine). I faced the reality of my condition and continue living a full life. I talk less and less about my heart unless it is educating women not to overlook their symptoms and it is OK to call 911 when experiencing chest pressure and pain.
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You raise a good point, Gabriela – the importance of picking and choosing when and with whom you decide to share your story (education!)
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I too have been exhausted and depressed (not to say bored) by the detailed repetition of my state of health to concerned friends and acquaintances.
Although a heart attack was a major and life altering event – it is only a small part of my life and does not define who I am.
In my own experience it is difficult enough to hang on to your own sense of identity after a frightening and infantilising spell in hospital and subsequent medical shenanigans.
I struggle still after almost a year to maintain a sane sense of proportion in my life and not to endlessly obsess about every little twinge and pain. The perceived obligation to recount every last grisly detail when asked is hard to resist.
I am also very aware of the strain this can put on my partner who has his own health concerns which have been put on the back burner although they have not diminished.
Thank you for this post – it has made me think and from now on I will choose who gets the full story.
Must also tell you how glad I am to have found this site – it is a great solace. Thank you for your energy and commitment – it is very much appreciated!
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Bon jour, Anna. Thanks so much for your thoughtful comment. I agree that maintaining a “sane sense of proportion” is VERY important in normalizing a major health crisis like a heart attack (an ongoing challenge for me, too!) You might also enjoy an older post called “How To Stop Boring Others With Your Heart Attack Story“. Glad you found my blog.
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Hi Carolyn!
I have discovered exactly this in my return to healthy privilege! If I have a business meeting and I meet with someone I knew BW (before wellness) and discuss my illness in any detail or context beyond “fabulous”, I am completely exhausted for the rest of the day!
I have taken to say “let’s discuss business first. We’ll get to that later!” And later just never comes. 😉
I didn’t know the science!
JG
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That’s such a useful response, JG (“business first…“) With rare exceptions, I’ve observed that most work colleagues really do seem to prefer a “fabulous” response anyway. So it’s a win-win for both of you…
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Carolyn, the ones who really do want to hear are those who saw me in the midst of cardiac events and are equally shocked now to see me in full work mode. Those I just have to say “Over beers sometime.”
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