While we’re at it – and I am always at it…

by Carolyn Thomas    @HeartSisters  

I read an article in The Guardian recently. It happened to be about menopause, a stage of life I have already graduated from (thank goodness!)  But it was still interesting to me, as a person who once exhibited world-class projectile sweating during an event at which I was the guest of honour.

But that’s another menopause story entirely.

One particular line of this article leaped out at me. Not about menopause at all, actually, but about women who have opinions.    .

The line was written by the smart and funny Guardian columnist Suzanne Moore:

“While we’re at it – and I am always at it…”

Have you, like Suzanne, started to feel this way lately?  As if there is hardly a topic out there that doesn’t inspire a burning urge to share your enlightened opinions?

For me, being “always at it” describes the act of speaking up when you have something to say. This has fully blossomed only recently (thank you menopause!)

Before now, in most areas of life when I could have been “always at it”, I tended instead to weigh carefully whether it was polite, acceptable, prudent, considerate or especially in my best interests to publicly speak up. Usually, while I was busy dithering, the moment passed and it was, once again, too late to speak up.

But it’s surely not that I don’t have strong opinions, as my family and closest friends can readily assure you. 

It’s more that, like many women my age, I’ve been socialized for my entire life toward public politeness. Little girls like me were raised to be polite. And nice. And not make a fuss. So I learned to keep my mouth shut when I should have been speaking up.

Oh, I did speak up about important issues, but I usually did this long after the fact, like during wine-fueled late night confabs with my girlfriends.  We liked to review the events that were bothering us – but which we had consciously decided not to speak up about at the time.  In our replayed conversations, this time we’d say what needed to be said. We’d ask for what we wanted, set clear boundaries for what we would and would not tolerate, speak up for ourselves and those we cared about – instead of swallowing the words, unchewed, polite, stillborn, silent.

It did not help us to rehash what we wished we’d earlier said. It only made us angrier at ourselves for not being able or willing to speak up. We also suspected that “being nice” was not all it’s cracked up to be. See also: Could Goodism and Self-Sacrifice be Linked to Women’s Heart Disease Outcomes?

It’s entirely possible to speak up without being rude, but “niceness” is a pervasive tradition that can still stifle many of us. We need only to observe the often ugly world of modern politics where female politicians are slammed for being “aggressive” when they speak up, while their louder, cruder and and ruder male opponents are lauded for being “assertive” or “strong”.

Sometimes it’s intimidating to speak up, especially in front of one or more people who are considered to be authorities. But consider the wise words of Michelle Obama, who, when asked during an Oprah interview if she ever felt intimidated sitting at big tables filled with smart, powerful men, replied:

“You realize pretty quickly that a lot of them aren’t that smart.”

I now wish that I too, like Suzanne Moore in The Guardian, had been more determined to be “always at it”.

Or to paraphrase the wise words of the famous philosopher, Madonna:  “A lot of us are afraid to say what we want. That’s why we don’t get what we want.”  We’re frequently justifiably afraid because we know from experience what can happen when we do.

For example, when I was misdiagnosed with acid reflux in mid-heart attack (despite my textbook Hollywood Heart Attack symptoms of central chest pain, nausea, sweating and pain down my left arm), I did attempt to speak up before I was sent home from Emergency. But I immediately learned what can happen to female patients who speak up. 

The Emergency nurse came up to my bedside, and sternly warned me:

“You’ll have to stop asking questions of the doctor. He is a very good doctor and he does NOT like to be questioned.”

I felt like my face had been slapped. I was not only already feeling supremely embarrassed for having made a big fuss over nothing but a case of indigestion, but now I was further humiliated for being such an openly difficult patient.

And the question that I had dared to ask this Very Good Doctor?

“But what about this pain down my arm?”

The point is: I was a grown-up, mature, adult woman in my 50s when this scolding took place. Yet my response to being scolded like a naughty child was to regress to childhood, to get away from that Emergency Department as fast as I possibly could.

I’d had the temerity to speak up for myself, to ask a sensible question (I’m no doctor, but even I knew that pain down your left arm is never a sign of indigestion!) – and then I learned what can happen to women who speak up. See also: The Medical Hierarchy Shift

Mine was an unfair fight. I was vulnerable, alone and scared, so hardly capable of withstanding a sudden scolding from somebody who was supposed to be helping me.

So when my symptoms returned (which, of course, they did!), I knew that there was no way I was going to endure further humiliation by going  back to Emergency to make another fuss over nothing. PLEASE NOTE:  Do not be like me. If you’re experiencing alarming symptoms that you suspect might be heart-related, seek immediate medical help. Do not be embarrassed to death.

I did somehow survive that heart attack despite the dangerous delay in appropriate diagnosis and treatment, but I have never forgotten the way that the nurse scolded me for speaking up.

The more I thought about it, the more I realized that this nurse would never have spoken to a male patient the way she spoke to me.

I have also never forgotten how, with just her one shot, I immediately caved in.

While I couldn’t speak up for myself at the time, I know that when I speak up now on this Heart Sisters blog, at my Heart-Smart Women presentation audiences, or in my book, it’s almost always because I do not want other women like me to go through what I did.

Our existing cardiology gender gap means that women heart patients are still being under-diagnosed compared to our male counterparts, and – worse – under-treated even when appropriately diagnosed.

This has to stop.

THIS. HAS. TO. STOP. 

But this reality will never stop until women and the clinicians who care for us speak up to demand change.

Ironically, it still seems easier for me to speak up on behalf of my heart sisters than it is to speak up for myself.  I’m working on that imbalance, however, as I wrote about here and here, describing what my grown children call their Mum’s “advancing progress towards Cranky Old Lady Land”.

I’m increasingly unwilling these days to tolerate the intolerable, ever since I decided to stop meekly putting up with bad manners from health care professionals.  See also: An Open Letter to All Hospital Staff

As time goes by, it seems to feel more natural to be, as Suzanne Moore says, “always at it”.

As this inspiring celebratory toast at modern baby showers urges us:

“Here’s to strong women.

May we know them.

May we be them.

May we raise them.”

Mask image: Annca, Pixabay

Q:  Have you ever wished for a replay of a time when you were reluctant to speak up?

.

NOTE FROM CAROLYN:   I wrote much more about speaking up about women’s heart disease 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 20% off the list price).

See also:

Skin in the game: taking women’s cardiac misdiagnosis seriously

Why doctors must stop saying: “We are all patients” (my guest post in the British Medical Journal (BMJ)

This is NOT what a woman’s heart attack looks like

“It’s not your heart. It’s just _____” (insert misdiagnosis)

Misdiagnosis: is it what doctors think, or HOW they think?

Seven ways to misdiagnose a heart attack

Misdiagnosis: the perils of “unwarranted certainty”

Cardiac gender bias: we need less TALK and more WALK

Unconscious bias: why women don’t get the same care men do

When you fear being labelled a “difficult” patient

The sad reality of women’s heart disease hits home

How can we get heart patients past the E.R. gatekeepers?

 

18 thoughts on “While we’re at it – and I am always at it…

  1. I did not recently suffer a heart attack, but a heart event. The first time I went to the E.R. I too was sent home with the idea that it was just heartburn or maybe anxiety.

    I had a nagging feeling it was something different, but believed the “experts”. After taking Zantac only to have it recalled this fall & then Omeprazole which brought on weird food intolerances, I had no relief from the chest pain. After coming down with mastitis, I wound up in the E.R. with those symptoms plus an abnormal EKG because my chest pain persisted.

    I was scared and angry that perhaps my chest pain had been heart related all along.

    I was very lucky to stumble upon your blog. Your perspective and humor are just what I needed and I am very thankful for them. I will never sit on the sidelines and keep quiet or only speak half of what my heart &/or mind desire.

    Liked by 1 person

    1. Hello Nicole – thanks for sharing that perspective. I’m sorry you’ve been suffering. A question I often ask my ‘Heart Smart Women’ audiences is this one: “How would you react if these exact symptoms were happening to your daughter, or your Mum, or your sister?”

      We all know the answer: we would NOT be embarrassed about making a fuss, we wouldn’t be sitting quietly on the sidelines, we’d be demanding help for this person we care about. Learning to pay attention to that “nagging feeling” you mention is an important part of getting appropriate care for ourselves! Best of luck to you…

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  2. Hi Carolyn,

    Gosh, there are probably a lot of situations for which I would like to have a time replay! I, too, was raised to be nice, polite and to not make a fuss. On top of that, I’m an introvert by nature, so there’s that.

    I have gotten a lot better at speaking up during medical appointments, exams, consults and such. Nothing like a serious illness diagnosis to make you realize sometimes you have to get a little loud, demanding or angry even.

    On a side note, the doctor who gave me my diagnosis via a phone call wrote in his notes (which I later read via my patient portal) that I sounded angry. Hell, yes, I was angry. Cancer can bring that out in a person. I’ve often wondered if he ever writes that kind of thing about men.

    As with you, I sometimes find it easier to speak up for others via my blog than to speak up for myself. I try to remind readers, and myself, that speaking up or self-advocating is a skill and as with other skills, it takes practice to get better at it.

    Great topic and post, as usual. Love that toast quote you shared too. Reminds me of this one from Madeleine Albright: “It took me quite a long time to develop a voice, and now that I have it, I am not going to be silent.”

    Don’t you just love that?

    Liked by 1 person

    1. Hi Nancy and thank you for sharing your perspective here. That comment on your chart – “sounded angry” – yoiks! Wouldn’t anger (and fear and anxiety and overwhelm and a zillion other responses flooding your body at a dreadful time like this) be considered a NORMAL human reaction?!

      I do love that Albright quote. I may have to go embroider that on a pillow… ♥

      Thanks again, Nancy…

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  3. There are probably thousands of times I could wish for a replay. However, like you….The most vivid experience I wish I could “do over” is an experience where I was ill, vulnerable, searching for answers and put my trust in a particular surgeon. NOT honoring my intuition and speaking up almost cost me my life.

    As an RN, when I was diagnosed with Hypertrophic Cardiomyopathy in 2006 I studied the disease and its treatment intensely… I knew all the latest studies and protocols… but in 2013 when I was symptomatic enough to require surgical myectomy, I was desperate….

    When the surgeon I met with said, “I don’t really believe in extended Myectomies” I felt a twinge of doubt… but said nothing… Maybe if I would have asked him “why?” I would have found out he didn’t believe in them because he didn’t know how to do one!!!

    So I got the 1960s version of a myectomy instead of the latest proven procedure …. and ended up having the surgery redone correctly a year later.

    I know this column is about women and heart disease … However, I have seen men blindly, trust, not ask questions, and feel “it is what it is” “the doctor knows best” as often or more more often than women.

    All of us, regardless of sex or age need to take more personal responsibility for our health and disease and become partners with our doctors. There is WAY too much scientific information and the field is changing so fast we cannot always rely on the “doctor knows best” model.

    If you have a doctor who does not believe in a partnership toward wellness, interview a new one… They are out there and no one, male or female, should settle for less.

    Liked by 1 person

    1. Hello Jill – I agree. A physician expressing unexplained doubt as your surgeon did, causing that immediate frisson of suspicion, is a clinician who has little or no updated experience with a complex procedure and not somebody you ever want to see in the O.R. looming over your body. I often think this about Dr. Oz of television fame, who at one time was a respected cardiac surgeon but now admits he spends only one day per week in the O.R. One day a week?!!? Jump off that gurney and RUN away fast!

      How tragic for people like you that such inability to admit one’s professional limitations puts his patients at unnecessary risk of suffering and poor outcomes. And another good reason to trust the gut instinct that warns us something isn’t quite right…

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      1. I am so excited to have found this great group– I believe started in England — that has just had a Meeting of the Minds seminar where the experts in this field are speaking.

        You can locate these doctors/speakers on this website. The videos can only be viewed from the website link and not shared by other means. Get ready to be amazed as these wonderful doctors. They have been adding videos daily. I hope this is as helpful to all as to me. I am sending the link to my PCP and cardiologist.

        Liked by 1 person

        1. I too have been watching the videos from the Meeting of the Minds event – some really interesting research presented by cardiologists representing the “Who’s Who” in the field of non-obstructive heart disease, especially coronary microvascular disease (MVD, which I also live with). I was especially interested in the studies suggesting that MVD might occur as a result of having a stent implanted!

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      2. I guess there are many times when I wish I’d spoken up, but I tend to not react fast enough and then think of things I wished I’d said much later.

        I guess that’s good, I’m sure I’ve missed saying some very terrible and hurtful things to people, including my kids (and lately my daughter’s boyfriend — still not sure I like him after a year and a half!).

        When I do speak my mind, I do try to be nice about it, after processing all the negatives. It’s not how you react, but how you recover, that matters.

        However, I do wish I had spoken up when it was clear I needed to go through a second cath and ended up with stent #2. The first time my cardiologist offered me the choice of Dr B doing the cath but since he doesn’t insert stents, Dr S would have to come in and do that, OR Dr S could just do the whole thing. Having only one doctor do the whole thing made the most sense to me, and Dr S was great.

        The second stress test was done by Dr B because he was available and my regular cardiologist wasn’t. When the results were “concerning” (his words — I had ALL the classic symptoms of a heart attack on the gurney after only a couple minutes on the treadmill), he consulted with me afterwards and said we should schedule the cath within the next few days and added that he would do it. He seemed so authoritative I hesitated to argue with him. But now I wish I had spoken up and said that I preferred Dr S to do the whole thing again, especially since it just seemed obvious that I would need another stent from the symptoms I’d been having.

        The second cath experience and recovery were rough — they were backlogged when I arrived on time and after I was prepped I had to wait a long time to even get into the cath lab. So everyone was stressed to begin with. Then after Dr B found there was a blockage, I had to lie there and wait 15 minutes before Dr S came rushing in to do the stent. It’s cold in the cath lab and I wasn’t able to move. Then after it was finally over and I was in ICU, instead of Dr S telling me to lie flat on my back for 6 hours, which I was prepared for this time (frankly this is the roughest part of the whole thing), Dr B ordered 8 hours! I will never have him do a cath for me again (hopefully will never have to anyway).

        Liked by 1 person

        1. Hello Meghan – that’s such a good example of having a gut feeling that you should ask for what you want, but are hesitant to say it out loud.

          Parts of your story are systemic and can’t be avoided sometimes (e.g. having to wait a long time – I think of this because I was admitted directly from the ER in mid-heart attack, an emergency procedure, which meant that my emergency immediately meant a cath lab backlog that likely lasted all morning). But when you describe having to wait in a cold room while waiting for Dr. S to be tracked down – well, every hospital has blanket warmers on every floor, so it seems fairly straightforward to ask patients if they’d like a warm blanket while they wait, for Pete’s sake! That’s just common courtesy that would help to reduce anxiety during an anxiety-producing procedure.

          Other parts of the story suggest an inefficient and potentially dangerous staffing problem. I’m not a physician, but I find it puzzling that any cath lab anywhere would book a heart patient who has already had one stent implanted for a second procedure performed by an operator who DOES NOT DO STENTS!

          PS re the boyfriend: good plan to say nothing, even if your daughter actually asks you for your opinion, as my own daughter once did while dating her former boyfriend of five years, Mr. Loser Boy (as we all privately called him): “Mum, do you think I’m wasting my time with him given that we don’t share the same goals or values?!?!” (My answer – while hyperventilating with relief – “Well, it really only matters what YOU think, honey…”)

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          1. You are giving me a lot to think about here with your comment about inefficient staffing . . . I hadn’t considered that. It has seemed kind of odd to me that Dr B does catheterizations but isn’t an interventionist to do stents — it does seem inefficient except to think that if a stent wasn’t needed it would free up Dr S’s time.

            Ours is a small hospital and serious cardiac issues need to be taken care of at hospitals in cities that are at least an hour away. For a long time I know that Dr S was the only interventionist and was on call pretty much all the time, until a second one was hired, and I know that both of them are now either retired or in the process of retiring, so hopefully they will bring on at least 2 more and make some big changes in staffing the cardiology department.

            Laughed at your comment about Mr. Loser Boy! Daughter’s boyfriend is definitely not a loser (he just bought a house at age 26, has a steady job as a chef) and there are actually good things that I see in him, but we just haven’t developed much of a relationship with him — he is just not friendly and doesn’t seem to want to get to know us, and our schedules never mesh to do anything together. Plus they are in their early 20s and the universe revolves around their private worlds, if you know what I mean.

            When they first began dating, my husband did speak up. He told my daughter he wanted to talk with him, so boyfriend came in one night when I was not there and they chatted for awhile. When he was leaving, hubby looked him in the eye and said, “Don’t give me a reason to break your face.” It flustered him so much that he walked out and got into MY car instead of his (same color cars) and sat there and said, “This isn’t my car . . .” Too funny — but not a good way to start a relationship. He’s been kind of afraid of my hubby ever since.

            So I’m willing to admit part of the relationship problems we’re having may have been our fault, LOL.

            Liked by 1 person

            1. Hi again Meghan – re the interventional cardiologist who can’t do stents: I’m stumped, too. Why have a person working in the cath lab who can’t do stents? Was he an inexperienced trainee? Or does that make sense in a small hospital that’s far away from a tertiary hospital that provides all cardiothroacic services (just to do a diagnostic angio?)

              I’m wondering if this was a holdover from the early days of angiography in the pre-stent 1980s, amid early complication problems with restenosis of the artery, when what some have called “‘plain old balloon angioplasty” was the only alternative to open heart bypass surgery until the introduction of the metal stent to help prop open that newly-reopened artery. There was a time lag between the balloon-only procedure and the decision to put the balloon inside a flexible metal stent (an expandable “metallic scaffold”) that could be permanently left inside the coronary artery to help keep it open – including the need for extensive training fellowships. (BTW, You might enjoy watching this 6-minute excerpt from Burt Cohen’s fascinating documentary on the history of this procedure!)

              PS re the boyfriend: “He is just not friendly and doesn’t seem to want to get to know us…” Gee, I wonder why! Perhaps that little chat your hubby had with him?!? 😉

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        2. On my first Cardiac Cath for coronary artery disease…. I got the “one-two switcheroo” also. I was surprised, but I didn’t have to wait more than a couple minutes for the stent Specialist to come in. I spent the night and did the 6hr flat thing.

          My most recent cardiac Cath, my cardiologist (who does not do caths) called in a young cardiologist that did Caths through the wrist…..What a pleasant easy recovery compared to the groin!

          I didn’t need a stent this time so not sure if he still would have had to call in a specialist or not.

          About the boyfriend… I agree with Carolyn …. My daughter dated several losers and even had babies with them … luckily she found a winner that married her and her two kids.

          They ask your opinion but rarely want it…..Watching my son be engaged for 2 years and then realize his fiancée was a witch… was very hard. Affairs of the heart… can be just as painful or worse than a heart attack. But they have to choose, have the experience and grow.

          Liked by 1 person

          1. Is that “one-two switcheroo” the official medical terminology for having a stent doc and a non-stent doc in the same cath lab, Jill? 🙂

            I’ve had two separate trips to the cath lab, both times for radial (wrist) access angioplasty procedures. Radial has become a game changer in interventional cardiology! You can practically tap dance off the cath lab table afterwards. Fewer complications, far less bleeding risk, shorter hospital stay, and patients love it.

            At our hospital, we have a unit called “Cardiac Short Stay” with 18 beds and 10 recliner “recovery” chairs for post-stent patients. Radial has been the default access in most Canadian, European, Japanese cath labs for several years, but until recently the U.S. has been far slower to adopt the practice for some inexplicable reason, given its proven advantages for patients.

            Re the boyfriend: Yoiks! That was always my biggest fear, Jill – that my own daughter would end up marrying Mr. Loser Boy and he would one day be the father of my future grandbabies. That was definitely a possibility! Luckily for everybody, she married the greatest guy ever, who has turned into the greatest Daddy ever (my darling granddaughter, Everly Rose).

            The reality seems to be that saying anything AGAINST the boyfriend/girlfriend can backfire horribly – forces them to be defensive (or, as in my sister’s case, even ending up a few weeks later in City Hall marrying the guy after our Dad ordered her then-boyfriend to get off the property and stay away from his daughter!)

            As you wisely say, our kids are on their OWN PATH, aren’t they?

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            1. My last heart cath was a right radial (wrist) and such a game changer for me. The worst thing for my previous cath was the 6 hours on my back. I ended up in severe back pain after the improper use of a bed pan. I suggested they use the “slim” bed pans they use on the orthopedic wards. That wait and the pain was the worst. I will always ask for the wrist entry if I need another.

              Liked by 1 person

              1. Good grief. Why can’t they use bedpans that are practical (and perhaps less dangerous)? If there is a next time, and if that angioplasty is an elective (non-emergency) procedure, ask well ahead of time so you can request radial (wrist) access again if possible.

                Radial is not universally available in all areas – and there are even disparities among interventional cardiologists within the same hospital, between hospitals, or between regions. Depending on where you live, we’ve got a long way to go!

                Requesting the safer choice when appropriate is a good example of the importance of speaking up. But most stent patients have no clue that there are two major options for the procedure!

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