Is ‘being nice’ hurting women?

30 Sep

by Carolyn Thomas    @HeartSisters    September 30, 2018

Imagine the reaction from Emergency Department staff to the woman I met at my Mayo Clinic training, the one who had been sent home from Emergency three days in a row despite her complaints of increasingly distressing cardiac symptoms. Each time she arrived there, she clearly declared the following to the Emergency physician, who continued to repeatedly dismiss her concerns:

“I don’t care what you say. SOMETHING is wrong with me!”

What a royal pain in the ass, staff may have muttered about her, sotto voce.

On her third visit, the physician recommended anti-anxiety medications. But on the fourth visit, on that fourth day, she was taken directly from the E.R. to the O.R. to undergo emergency coronary bypass surgery.

How we communicate to physicians is a profoundly important issue for women with heart disease, because, like my Mayo friend and me, women are far more likely to be misdiagnosed compared to our male counterparts. See, among many other reports (here, here, and here, for example) the 2018 Heart and Stroke Foundation report, Ms. Understood.

In my response to that document, I quoted Mayo Clinic cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, on the very real difference in how male and female heart attack patients are still being treated by Emergency Department gatekeepers (even when women’s cardiac enzyme blood tests for troponins – an accepted marker for heart attack – are elevated):

Screen Shot 2018-02-24 at 6.34.40 AMResearchers continue to describe this reality as the cardiology gender gap, blamed in part on the implicit bias against women among many medical professionals, and in part on women themselves, mostly because of how we communicate our symptoms to physicians.

Many women, for example, do not use the word “pain” at all to describe chest symptoms during a heart attack. We may instead minimize chest symptoms by describing them as fullness, heaviness, pressure, burning, tightness, aching – but not necessarily “pain”. And some women experience no chest symptoms at all.(1)

Yet almost all cardiac diagnostic/treatment guidelines worldwide clearly mention “chest pain” as a required tick box on a symptom checklist if women want to be believed in mid-heart attack. For some paramedics and Emergency staff, “no chest pain” = no heart disease.

Women also tend to worry about being perceived as a “difficult patient”. We are far more likely to apologize for wasting doctors’ time compared to our male counterparts, for example. We try to be “nice”. We are reluctant to “make a fuss”. We will remain quiet and respectful while we’re being treated dismissively or disrespectfully. This is so common, in fact, that there’s an entire field of research focused on women’s treatment-seeking delay behaviours during a cardiac event.

And we are correct to worry about this “difficult patient” perception, because researchers tell us that the quality of care we receive (or not!) can be affected by how physicians perceive us. How we speak, the words/tone/volume when we do speak – even our age or ethnicity – are all rapidly assessed, sometimes even contributing to women’s higher cardiac misdiagnosis rates.

Back in 2008, while experiencing terrifying heart attack symptoms (central chest pain, nausea, sweating and pain radiating down my left arm), I asked the Emergency doctor (who had just misdiagnosed me with acid reflux) about this alarming pain in my arm. And a few minutes later, I was scolded by his nurse in no uncertain terms:

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

Her stern warning to me left no doubt in my mind that I was, in fact, a “difficult” patient because I’d had the temerity to ask a question. I felt so humiliated and embarrassed, I couldn’t get out of there fast enough, and although symptoms returned and worsened every day, it would take me two weeks before I finally forced myself to return to that Emergency department because this “acid reflux” pain by then was unbearable.

Speaking of women being “nice”: whatever your opinion of the recently televised Supreme Court judiciary committee hearings in the U.S. (and that’s most likely precisely the same opinion you held before watching this highly politicized event), the televised interrogation of Dr. Christine Blasey Ford and Judge Brett Kavanaugh was a remarkably clear example of the differences in male and female communication styles that persist, no matter how high the stakes.

As Maggie Haberman, White House correspondent for the New York Times, observed:

“Regardless of whether Ford is right about what took place or Kavanaugh is, if any woman who felt wrongly accused fought for her life by crying, yelling and being obstinate with senators, she would be eviscerated as crazy, hysterical, and weak.”

Dr. Deborah Tannen agrees with Maggie. The longtime professor of linguistics at Georgetown University and author of many books (including my personal favourite, “You Just Don’t Understand: Men and Women in Conversation”) analyzed the linguistic gender dynamic for PBS News Hour’s Amna Nawaz at the time:

“The contrast between the two was striking. It was a stereotypical representation of how women and men would be expected to present themselves and behave. He was blustery, he was taking up as much talk space as possible. His anger was an emotion that is approved of and often seen as positive in men.

“But (Dr. Ford) could NOT be angry, although she had much reason to be, but it would be very unacceptable for her to have shown anger. Everything about her communication was deferential.

“Meanwhile, he was interrupting the senators. He was disrespectful to the senators. He turned the questions back upon the senators.”

That woman I met at Mayo? She was taking a big risk when she abandoned being nice in favour of being persistent and assertive, yet it turns out that she was also much smarter than I was. Unlike me, she pushed through her reluctance to be seen as “difficult”, ignoring whatever embarrassment she felt about “making a fuss” time after time despite the dismissive reactions of Emergency Department staff – until she was finally correctly diagnosed and appropriately treated.

Yet patients like me and my Mayo friend walk a razor-sharp tightrope. We risk being labelled as “difficult” if we persist, yet we risk being dead if we don’t.

The reality is that most men do not have to fight to be believed, either when reporting cardiac symptoms in an Emergency department, or when reporting criminal assault.

Women shouldn’t have to, either.

You know your body. You know when something is just not right. Speak up. Stand up. Show up.

 Because just being “nice” is not working for us anymore. 

*PS: In my book, A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, 2017), I wrote much more about doctor-patient communication, and offered these tips for appropriately and assertively communicating your cardiac symptoms to physicians:

  • Adjectives are important. Use descriptive words like dull, throbbing, intense, burning, tingling, heavy or piercing.
  • Describe how symptoms change your daily life and ability to function. Instead of just saying you feel “tired”, talk about specific changes in your day-to-day life (“Can’t carry laundry basket up the stairs.”)
  • Describe a location for your symptoms. Point to specific body parts if necessary.
  • Start a Symptom Journal to help you track what you’re experiencing. Date/time of day/ what you were doing/eating/feeling in the hours leading up to symptoms, e.g. ‘I feel worse at night or whenever I walk up our steep driveway.”
  • Be insistent about your symptoms if it feels like your physician isn’t getting it.  Do not minimize or self-diagnose (e.g. “This is probably just a pulled muscle…”)
  • If you feel embarrassed (for example, if you fear you may be judged or criticized for smoking), try saying, “This is hard to talk about, but I need your help.”
  • IF SYMPTOMS PERSIST/WORSEN AFTER YOU ARE SENT HOME FROM EMERGENCY, do not be like me! Be like my Mayo Clinic friend who kept going back. Do not be embarrassed to death.

(2)  J. Canto et al, “Association of age and sex with myocardial infarction symptom presentation and in-hospital mortality,” JAMA. 2012 Feb 22;307(8):813-22.

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NOTE FROM CAROLYN: Please do NOT leave a comment here listing your current symptoms. I am not a physician and cannot advise you what to do. If you are concerned that you might be experiencing a cardiac event, please seek a professional medical opinion. Read my fascinating disclaimer page.

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Q: Have you held back from speaking up because you were being “nice”?

See also:

WARNING: Take your blood pressure medication before you read Maya Dusenbery’s book: Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

 

 

17 Responses to “Is ‘being nice’ hurting women?”

  1. Micheline W. October 28, 2018 at 4:05 am #

    Great post. We are raised to be nice, to smile, to get along. We’re called ‘opinionated’ while men are called ‘informed’, and where has “being nice” got women so far? Loved your review of Maya Dusenbery’s book Doing Harm which tells of the ultimate price women pay for generations of niceness. Thankyou for continuing to raise important reminders to all of us. Thankyou most especially for writing your book which covers what can happen when women are more worried about being “nice” than demanding the cardiac care we deserve.

    Like

  2. Nella October 16, 2018 at 6:42 am #

    I appreciate this post very much. I’ve learned, the hard way, to speak up for myself, sometimes with interesting consequences.

    I have AFib and was being treated by an acupuncturist as part of my approach to dealing with it. It was helpful for a while, till the doctor started to change. He began complaining in our sessions about my (Obamacare) insurance, how he wasn’t getting enough money for me. At one point I asked if he no longer wanted to treat me. Oh no! He thinks I’m wonderful!

    The complaints continued, lots of whining about his admin stresses, so I finally asked him to stop. He continued, I asked again, he then complained about my having taken up *a lot* of his time and basically behaved like a child having a tantrum and refused to treat me.

    I followed up with a respectful email in which I took care to tell him what I appreciate about him as well as the reality that I would’ve happily spent less time if I’d had an indication that’s what he wanted (he never had done so).

    His response was to immediately kick me out of his care.

    It’s been upsetting, but also a relief after realizing just how much energy had gone into a low-grade worrying that I was being too much, taking up too much time.

    My greatest challenge with AFib has been the dismissiveness of doctors.

    Thanks for this blog!

    Liked by 1 person

    • Carolyn Thomas October 16, 2018 at 7:12 am #

      That was a good life lesson, Nella. I’m betting that the next time this happens (any healthcare professional complaining to a patient about not making enough money/spending too much time on your treatments!), you will just quietly and immediately remove yourself from that office and walk out the door. In this case, you were the one being respectful (a follow-up email?!!!) and he was the one acting like a spoiled brat. That’s insufferable. You deserve better, and you know that now.

      Like

  3. Chris Corbit October 1, 2018 at 9:49 am #

    Carolyn,

    Thank you for your insight and advice for dealing with medical personnel. Your blog is right on the money. There is a definite difference in communication styles and perceptions between men and women.

    You have made an excellent analogy with Ford and Kavanaugh as examples.

    It’s been my experience that it doesn’t pay to be nice, especially when your life is on the line. Persistence and directness are necessary if you want immediate care.

    Your examples of ways to communicate that need are also excellent.
    Thank you,
    Chris

    Liked by 1 person

    • Carolyn Thomas October 1, 2018 at 5:28 pm #

      Thanks for sharing that perspective, Chris. I think that those two qualities you mentioned as necessary (persistence and directness) are unfortunately also the two qualities that frightened, sick patients whose lives are “on the line” are most unlikely to be really good at in the moment.

      I recall for example, that most of my friends expressed shock and disbelief after I’d been finally diagnosed correctly that I, OF ALL PEOPLE, had delayed going back to the ER because I was too embarrassed after that ER doc had told me “it’s not your heart.” Those who know me see me as a strong, outgoing person who has no trouble being assertive – but when that man with the letters M.D. after his name misdiagnosed me in his authoritative, confident, no-nonsense manner, I was no match for him and that scolding nurse. I caved in immediately.

      I like to think that the next time I go back to Emergency, I will respond very differently – with persistence and directness, as you say.

      Like

  4. quietgirlspeak September 30, 2018 at 12:18 pm #

    Thank you for this post. I had panic attacks for a very long time. They are few and far between now, but there were a couple of times where I was really scared. I was short of breath, dizzy, and had left arm pain. My aunt died of a heart attack at 35, my uncle at 42, and my stepdad (though not a blood relative, young heart attacks are a real thing to me), at 34. One time, I went in feeling very out of my element and a young doctor rolled his eyes at me when I asked for a test!

    Liked by 1 person

    • Carolyn Thomas September 30, 2018 at 1:33 pm #

      Oh my. That doctor who rolled his eyes right in front of you was being unprofessional and downright rude. And how could you possibly be expected to respond to that kind of appalling behaviour from the very person who is supposed to be helping when you are feeling so scared and overwhelmed? You’re not alone. About 40% of people living with a panic disorder have gone to Emergency at least once because of what seem to be severe cardiac symptoms. But you don’t know they’re not cardiac when you’re in the middle of them!

      Like

  5. Helen Williams Akinc September 30, 2018 at 11:46 am #

    This is such a difficult problem. Most of the time, I try to be assertively nice…I ask intelligent questions, tell the medical staff that I want such and such. Sometimes the nurse is basically a “screener” who decides what your real problem is, and is also the person who, without knowing you at all sometimes, chastises you for something.

    Definitely a double standard. The worst experience I’ve had was with a female cardiologist (young) who in the beginning acted like she was my new best friend. Call any time, blah, blah, blah. But when I did call because I had very serious edema in both legs which went away prior to the appt. some days later, she first said sarcastically, “I am so underwhelmed”.

    I should have stood up for myself then but didn’t. She went on to instruct her assistant to essentially ignore me and tell me to contact my family doctor before contacting her. She suggested it might be arthritis.

    I did change cardiologists after that and she left the hospital and went to another state. Fortunately my older male cardiologist is one of the most respectful physicians I have ever encountered.

    I also get fed up with nurses chastising me for things the doctors agree were pretty intelligent (like taking my hubby’s nitro after nothing else stopped my chest pain). Or that time the nurse scolded me in anger as I was being wheeled into the cardiac lab.

    Of course, had Dr. Ford reacted in anger the way Kavanaugh did, she would have been permanently branded as a hysterical woman.

    I try very hard to walk a fine line – assertive politeness. I ask researched questions. I print out materials to give to the doctor if my question involves specific findings or information. Sometimes I also use “MyChart” to let them know the questions I have ahead of the appointment so that they have a heads’ up. I use MyChart to state that I am concerned about xyz and to let them know that I want their advice in dealing with xyz.

    Having a written paper trail is helpful. It then ceases to be “he said, she said”.

    Liked by 1 person

    • Carolyn Thomas October 2, 2018 at 5:44 am #

      Thanks for this, Helen. You bring up an interesting and relatively common scenario here: when significant symptoms make us call for an appointment, but then symptoms decrease by the time our appointment day arrives. What do we do? Obviously something caused those distressing symptoms – should we keep the appointment to try to solve the mystery? Or should we cancel but then risk missing something serious after all?

      It’s hard to imagine what a patient could possibly say in the face of her “underwhelmed” response.

      Like

  6. Jennifer Merhar September 30, 2018 at 9:03 am #

    I am very much saddened that you used current USA politics for your analogy. I’ve been the unheard female patient, I’ve also been falsley accused and justifiably angry. You jumped the gun on bringing this political fiasco into your blog.

    Like

    • Carolyn Thomas September 30, 2018 at 2:19 pm #

      Hello Jennifer – your response reminded me of another regular reader who a while ago told me how upset he was because I’d mentioned a personal opinion that he didn’t happen to share (it was so long ago, I can’t even remember now which blog post or topic that was!) His exact words to me at the time were: “And who cares what YOU think anyway, Carolyn!?!”

      I remember feeling so surprised when I read that. It suggests that he views this blog as somehow being produced by some nameless faceless organization that churns out only approved academic content for his unique benefit.

      But of course, I’m not that.

      Like

    • Fran Perry September 30, 2018 at 3:06 pm #

      Thank you for your response. I said the same thing in a different way.

      Like

  7. Fran Perry September 30, 2018 at 8:36 am #

    I do not feel Dr. Ford was being interrogated at all. When the Republican side was told they would be “all white men” ganging up on a poor defenseless woman, they did what they could do to make sure she was being interviewed by a professional , experienced sexual trauma person. It’s all a matter of perception. Or….you can’t win them all. To say she was being interrogated infers she was being led astray. It has now come out that her lawyers never told her she didn’t have to testify in public. She could have testified in the comfort of her own home.

    I’ve always respected your opinions and knowledge and most of all, your experience. It’s been an eye opener. However, your comment was biased in the favor of women, and I don’t think that’s fair to the men involved..

    Like

    • Carolyn Thomas September 30, 2018 at 1:00 pm #

      Hi Fran – you’ll notice that my use of the word “interrogation” applied to BOTH Dr. Ford and Kavanaugh, and in her case it was certainly an accurate use of the word’s definition: “to ask someone a lot of questions for a long time in order to get information”. I’m not commenting on, nor do I care about, what could have/should have happened behind the scenes because nobody knows for sure about that, but only what I saw and heard.

      And specific to this topic of women needing to be “nice” – the remarkable differences in, as Dr. Tannen said, “It was a stereotypical representation of how women and men would be expected to present themselves and behave.”

      The great thing about writing this blog is that I get to insert my own perspectives about the world around me as I see it, just as you do, and I will always be happy to support women whenever I see unfairness – whether that’s going on in the Emergency departments of the world, or on my television.

      Sometimes you’ll agree with me, and sometimes you won’t – and that’s okay.

      Liked by 1 person

  8. Andrea R September 30, 2018 at 6:05 am #

    Thank you Carolyn. This practice persists at all levels of the hospital system. The weekend before Labor Day weekend in the US, I presented myself at the ER window. I don’t know who sits there and prints out bracelets, etc. I told her I had chest pain, jaw pain, profuse sweating, shortness of breath and nausea. She snapped the patient bracelet on my wrist and told me to have seat, “someone would be with me shortly.”

    In 2012 when my anorexia was active, I was at that hospital ER every weekend needing fluids after having abused laxatives and diuretics. I went through a period of health anxiety. I’ve had my share of eye rolling and heard comments from the staff when they thought I was out of ear shot.

    But I thought this could be serious. I still didn’t speak up and was sent to sit in the chair. I saw people go ahead of me who appeared to be in no apparent distress. I was nearly doubled over from the pain. I don’t know how long I waited – one’s perception of time tends to be off in a situation like that. Finally a nurse came close enough to hear me while she was calling another patient and I said something to her. I was called in a couple of minutes later.

    What if I was having a heart attack?

    I did not have a heart attack, though I was admitted for three days. It turned out that the nifedipine at 30 mg, which was lowered from 90 mg while I was in the rehabilitation center for the stroke, because my blood pressure was so low had basically stopped working as far as the coronary artery spasms were concerned. I was on morphine the whole time I was in the hospital. When I saw my cardiologist for a follow-up she added Ranexa and I’ve been fine.since.

    Who trains these front line people?

    Liked by 1 person

    • Carolyn Thomas September 30, 2018 at 6:18 am #

      Good grief! That’s appalling, Andrea! The symptom “chest pain” alone should raise the alarm for everybody in any ER!

      “Have a seat!?!?!” Unbelievable… It’s only been a month – I hope you will file a formal complaint with the hospital after that unacceptable triage experience. If we don’t speak up to those who are in a position to change things, well, things will never change. Thanks for sharing that story…

      Liked by 1 person

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  1. Journeying Beyond Breast Cancer - October 7, 2018

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