“The doctors want my symptoms but not my stories”

by Carolyn Thomas     @HeartSisters

Marilyn Gardner, in her 2014 book called “Between Worlds: Essays on Culture and Belonging“) wrote about a compelling conversation she once had:

Yet our physicians aren’t trained to embrace our stories, but instead to ask right away, “What brings you here today?” to kick-start a brief Q&A that can most efficiently solve the diagnostic mystery sitting across from them.      .     .   

So it’s a good idea to have your own answer ready before you even get to the doctor. That’s the recommendation of Dr. Leana Wen, author (along with Dr. Joshua Kosowsky) of When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary TestsDr. Wen explains:

“Doctors end up asking about symptoms rather than the story. And [people] then get conditioned to talk about their symptoms instead of their stories. But studies have shown that over 80 per cent of diagnoses can be made just by listening.  By that, they mean listening to the story, the open-ended story of what happened, rather than asking a list of yes-no questions.”

Dr. Wen also suggests that you don’t start off by simply telling the doctor that your chest hurts. Instead, tell the story of it. For example:

  • when it started
  • if it’s been painful before
  • what you were doing when you first felt it
  • how it felt
  • how often you feel it

“If a [person] were allowed to tell the story, they might also feel more listened to as well,”  as Dr. Wen says.

“Blame the 18-Second Rule!” warns Dr. Jerome Groopman, professor of medicine at Harvard, in his highly-recommended book How Doctors Think:

“Eighteen seconds is the average time it takes a doctor to interrupt you as you’re describing your symptoms. By that point, he/she has in mind what the answer is, and that answer is probably right most of the time.”  

Subsequent studies have suggested that 18 whole seconds of being listened to might even be a luxury.

When Mayo Clinic’s Dr. Victor Montori and his colleagues researched this time-to-interruption issue in 2018, for example, the majority of physicians in their study waited only 11 seconds on average before interrupting their patients, as he explained:(1)

“Time constraints and the use of electronic medical records can hinder patient-clinician interaction. Patient-facing interactions (in contrast to computer-facing ones) account for only about 50 per cent of the clinical time, potentially promoting more frequent interruptions.”

I will never forget the heart attack patient who told me her own story of choosing words carefully. Her first cardiac symptoms included an alarmingly debilitating fatigue that she’d never experienced before. When she reported this to a physician, he prescribed anti-depressant medications for her.

But she knew she was NOT depressed, so she asked him point blank:

“Will this drug help me to carry my laundry hamper up the stairs? Because right now, I’m no longer able to lift it.”

In other words, not just “I’m so tired”,  but “I’m so tired that I can no longer _______”.

Harvard researcher Dr. Catherine Kreatsoulas has written about the words women use to describe their cardiac symptomsShe and her colleagues found a difference between how men and women describe chest pain, which is the most commonly reported heart attack symptom in both sexes. But she also found that women sometimes used different language to describe their symptoms compared to men.

When I first interviewed her here,(2)  I was surprised by her description of witnessing women arguing with Emergency physicians  – even in mid-heart attack:

“I cannot count the number of times I observed a physician leaning over a female heart patient in the  Emergency Department while asking: ‘So tell me about your chest pain’ – and the woman very quick to respond:

“Well, I don’t really have chest pain. I have a discomfort, it’s more like pressing, I wouldn’t call it chest pain, I would describe it more as a bad ache. . .”

“And much to my amazement, I would observe the physician record in the patient’s notes, No CP’ meaning no chest pain!

As Dr. Kreatsoulas discovered, it’s relatively common among female heart attack patients to use words like “pressure, heaviness, fullness, tightness, aching, burning” instead of the word “pain” to describe their chest symptoms. She told me later that she wonders how many women’s charts say “No CP” because of the words they said to a physician – not because they don’t have chest pain.

In a Medscape interview with cardiologist Dr. Eric Topol, Dr. Leana Wen offered suggestions on closing this communication disconnect between how patients tell their stories and how doctors listen. For example:

♥  Better listening:   “I find that 80 per cent figure for “diagnosis from listening” astounding. If we could invent a test that would give us the right diagnosis 80 per cent of the time, we would consider it a miraculous test. Instead, as a result of technology and pressure on a doctor’s time, we are spending less and less time listening. If physicians can listen in the extremely busy and chaotic setting of the ER, and if we can focus on our patient, not only will it save time, but it will also prevent misdiagnoses.”

♥  Patient empowerment:   “I would encourage patients to really understand themselves, to tell a better story, and not be afraid to advocate for themselves in a way that is collaborative with their physician.”

Dr. Wen, by the way, believes that physicians rarely see themselves as the kind of doc who is not a good listener:

Doctors tell me, ‘I totally agree! This is a big problem in the medical profession!  But I am the doctor who listens; these other doctors, THEY are the ones who DON’T listen’!”

There are two sides to the importance of story-telling in medicine: women need to be more strategic in learning to “tell a better story”, as Dr. Wen recommends – and physicians need to truly listen to women (which, according to many emerging studies on implicit bias in medicine, can be a challenge). 

Women need to clearly describe how having specific symptoms is affecting our ability to function. We need to stop self-diagnosing (“It could be just a pulled muscle…”).  We need to stop minimizing the severity of our symptoms. We need to stop apologizing to healthcare professionals for making a fuss.

And we need to stop sounding like Elizabeth Banks in her brilliant little 3-minute film –  in which she calls 911 and says sheepishly, “Sorry to bother you. . . but I think I might be having just a little heart attack. . .”

As Dr. Wen says, physicians must truly listen to each person no matter how “extremely busy and chaotic” the setting.

To paraphrase the words of the great physician Sir William Osler in the late 19th century, your patient will tell you what the diagnosis is – if you listen.

1. Singh Ospina, N., Montori, V., Phillips, K.A., Rodriguez-Gutierrez, R. et al. “Eliciting the Patient’s Agenda – Secondary Analysis of Recorded Clinical Encounters.” J Gen Intern Med (2019) 34, 36–40.
2. Kreatsoulas et al. “Reconstructing Angina: Cardiac Symptoms in Women and Men.” JAMA Intern Med. 2013; 173(9):829-833.

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NOTE FROM CAROLYN:  I wrote much more about doctor-patient communication in my book A Woman’s Guide to Living with Heart Disease, (Johns Hopkins University Press, 2017). You can save 20% off the book’s cover price if you order it directly from Johns Hopkins University Press (use their code HTWN). Or ask for it at your local library, your favourite independent bookshop, or order it online (paperback, hardcover or e-book) at Amazon.

Q:  How has being able to tell your story to a physician helped the way you were diagnosed or treated?

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See also:

-Visit Marilyn Gardner’s blog at Communicating Across Boundaries, and read her brilliant 2016 guest post here called Marilyn Gardner’s Stupid Phrases for People in Crisis

-Words matter when we describe our heart attack symptoms

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

-Same heart attack, same misdiagnosis – but one big difference

-How to communicate your heart symptoms to your doctor

-Why won’t doctors believe women?

-Signals, noise, context – and your doctor’s brain

-Six rules for navigating your next doctor’s appointment

 

16 thoughts on ““The doctors want my symptoms but not my stories”

  1. I love this. I can totally relate. I’ve had medical problems for 20 years and the doctors just cut me open and biopsy or just treat the symptoms.

    I was a preemie had a difficult birth, my mom and I almost died. I was sick a lot as a child and had a lot of strep throat. My sister and I had scarlet fever and my brother rheumatic fever. I continued having strep throat all growing up. Constant swollen glands, sore throat. Into my early 20s in addition to the glands in my neck, the glands along my jaw and the sides of my face started to swell. Would feel sick/lazy would go to the doctor and was always given antibiotics and steroids.

    In my late 20s, I started getting bad varicose veins and blood clots. Still no answer to why I was always feeling bad. Started taking antidepressants, then added anti-anxiety meds.

    Then I’m told I have asthma then COPD…. so now I have a long list of symptoms, swollen glands, shortness of breath, excess yawning, cluster headaches, ocular migraines, sinusitis, just a crazy long list of things, like every time I go to the doctor, they “think” I have something else.

    I think I have one thing wrong that causes all the problems I have. But I don’t want to sound like the crazy person saying hey I fall down at least once a week, also I randomly let go of things and drop them. Oh yes, I also choke a lot, or my drink goes down the wrong pipe. Sometime my legs feel like i just finished 20 squats and my entire body is weak like a noodle, but i’ve done nothing and can’t do anything because in order to feel better I have to lay down for hours….

    Sometime my long bones hurt so bad I almost can’t take it…. Sometimes when I start walking, I feel like I’m spinning and going to fall down. I walk funny because I make sure my feet touch the ground so I don’t fall…. I have no ambition and to top it all off, most of the time I just blame it on being lazy because that is what parents, teachers, partners have told me in the past. I honestly wanted to write Dr Phil and be like hey am I sick or just lazy? It’s hard being a woman!

    Liked by 1 person

    1. Hello Bethany – I’m sorry you’re experiencing so many distressing symptoms, with no answers about WHY. I’m not a physician, so cannot comment specifically on your situation, but I can tell you generally that swollen glands are not a sign of laziness. Neither is falling down. Nor being dizzy. Something is causing these symptoms – but what? !

      I suspect you are correct: there very well may be one underlying systemic condition that is behind this wide range of debilitating symptoms. No wonder you feel like you have no ambition – it’s hard to feel “ambitious” when you feel so awful. You might want to start a Symptom Journal (I wrote more on this here) Start with listing the date, time of day, type of symptom, what you were doing/eating/feeling in the couple hours leading up to worsening symptoms. Sometimes a pattern begins to emerge that can help you and your doctors solve the mystery.

      Good luck to you.
      Take care, stay safe… ♥

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  2. Yep! If you listen long enough, the patient will tell you what is wrong with them. Also, another great approach is to ask “what things could you do before that you can no longer do now?” Oh, and always ask if there any other questions.

    Make PAs great again.

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  3. Damn right. Wah wah wah. We’re already an hour behind and we have 6 people waiting, 10 FMLA forms to fill out, 62 prescriptions to refill and more. Get a therapist.

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  4. Absolutely accurate info here. To my cardiologist I am a biological phenomenon that needed medical intervention, whereas I see a whole female human. The medical community doesn’t have an interest in the whole person or how our lives have been altered forever.

    Liked by 1 person

    1. Yes! We are each one of us a “whole female human”, Roz! Last month, I quoted Dr. Rita Charon here (one of the pioneers in the field of Narrative Medicine, and author of the classic book “Narrative Medicine: Honoring the Stories of Illness”) who wrote:

      “While doctors are knowledgeable about disease, they do not adequately appreciate that illness changes everything for the patient…”

      It takes a very special person to have the ability to listen compassionately to countless patients all day long. Luckily, physicians like Dr. Charon, Dr. Groopman, Dr. Wen, Dr. Montori (author of a wonderful little book I think you’d LOVE called “Why We Revolt“) – and many others whom I like to quote do have that ability, and best of all, are driven to teach their colleagues as well.

      Take care, stay safe…. ♥

      Like

  5. Hi Carolyn,

    Once again, you write about a very important topic that certainly crosses disease lines.

    I find that keeping a journal and making a list of my questions and symptoms, along with dates and times, intensity of pain or whatever, what I was doing and whatever else I can think of if possible, before appointments helps.

    We need to be as specific as we can, which again, is why writing stuff down is so helpful, for me anyway. Patients need to take responsibility, of course, but doctors need to take the time that is needed and really allow the patient time to share. Time restraints cannot be an excuse.

    Of course, this doesn’t mean patients can take all day either. There is room for improvement on both sides, for sure. This is two-way street, but docs need to remember patients are the ones in a vulnerable state and patience on their part is needed. Sometimes a lot of patience is needed. Any good listener is patient. Compassionate care just cannot be rushed.

    I love Dr. Wen. I should get my hands on her book. Oh, one other thing, sometimes we neglect to tell our doctor our story because we’ve already told it to the nurse who checks us in. It can feel like we’re repeating ourselves. Which I guess we are. But that’s okay! Try to tell your story even better the second time. Don’t rely on the notes the nurse (or someone else) has written or shared.

    Thanks for the post. Stay safe. x

    Liked by 1 person

    1. Thanks for sharing your perspective on this, Nancy. I like your journal suggestion a lot (wrote more about that here: https://myheartsisters.org/2019/06/30/start-a-symptom-journal/ This journal can help both the patient (getting key points/dates/details organized in advance) AND the physician (takes far less time to review an organized list of issues written down than it might take to hear what could turn into a long story).

      You’re so right: as Dr.Wen points out, both patients AND physicians need to do a better job in communicating. There are some people who can take all day, as you say (one of my very chatty elderly neighbours comes to mind: I know in advance that even running into her in the lobby some days just to chat about the weather could take an hour, so I can only imagine how much time she needs at her medical appointments while discussing something as important as her health!)

      I was struck by Dr. Wen’s advice to patients to “tell a better story” – which I didn’t interpret as exaggerating reality, but as doing a more effective job in communicating key issues (and especially trying NOT to do the self-diagnosing, minimizing and apologizing that women especially tend to do).

      Telling our story to the nurse or the receptionist as we’re being checked in is typically the bare bones version of why we are here today. Our REAL story begins the minute the doctor walks in.

      Thanks again, Nancy – I hope you’re feeling much better day by day since your surgery.

      Take care, stay safe….. ♥

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  6. I distinctly remember the phone conversation I had with my cardiologist … that resulted in scheduling a cardiac catheterization where a 90% lesion was found in my circumflex artery and a stent placed.

    I waited several days to email him about vague chest symptoms I was having … “I didn’t want to bother him, I thought I might be an alarmist” – as I had just had an ablation procedure 2 weeks earlier.

    After reading my email he called me directly and we spoke for 20 minutes trying to unravel the story of these symptoms. What, when, where and how they differed from my “usual HCM chest pains”.

    We decided against a need to go to the ER, but we also decided against non-invasive testing and agreed on the cardiac catheterization in 3 days.

    So we caught what was going on early and I also avoided the ER (which he knows I hate).

    I feel blessed to have a cardiologist that has always listened and included my thoughts and intuitions in our collaborative decision making.

    Liked by 1 person

    1. Hi Jill – you are indeed blessed to have such a cardiologist! It’s wonderful to hear about a physician who calls the patient directly and chats for 20 minutes (!) discussing that patient’s current symptoms. He is a keeper!

      Take care, stay safe… ♥

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  7. The speed at which they assume a diagnosis is astonishing. My husband started to suffer from debilitating vertigo, he was sent for scans, MRI’s, the works. Nothing was found and he was offered something for anxiety!

    No one questioned him about what was happening when it started. We did our own investigation and discovered that 8 months before his blood pressure medication was changed. One of the main side effects of the new drug was vertigo, which can start to surface after about 6 months of treatment!

    We went back to the doctor and he said he didn’t think it was that but he changed it anyway. Five days later he was free of vertigo and has been fine since.

    Liked by 1 person

    1. A good example of a diagnostic mystery solved by the patient and family, Cathran. That medication change was part of your husband’s ‘story’ – and a reminder to all of us to carefully read that drug information disclosure that’s included with new medications. There’s no such thing as a benign drug – not all side effects are seen in every patient, but when you’re the one with symptoms, you should find out all of the potential side effects of every medication (both prescribed and over-the-counter). These serious reactions are sometimes seen in drug-drug interactions, in which unusual or rare side effects happen when two different drugs are combined – a significant issue as we get older because of the multiple drug prescriptions so many are given as we age.

      I’m thinking of all that wasted time while your husband continued to suffer while having expensive (and unnecessary) diagnostic testing all that time – and each negative test result led his doctors farther away from the actual cause – if only somebody had asked him about his story…

      I had a similar experience when a routine blood test showed a serious drop in potassium – which turned out to be a known side effect of the new blood pressure drug I’d been on for several months. Change the meds, change the side effects. Thanks so much for sharing this important message.

      Take care, stay safe… ♥

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  8. … and in my experience, some quite recent, a doc won’t pay any attention to the story anyway. Thus, 30+ years of my personal documented heart disease and 3 generations of heart disease in my family were ignored by one [sexist?] doc.

    So I’d say it isn’t always that you have to tell your story, you have to squawk if it’s not listened to. I did. It worked.

    Liked by 1 person

    1. Hello Sandra – your “squawk” observation reminds me of the actor Shirley MacLaine playing the mother in the film Terms of Endearment: she desperately begs the hospital nurses to give her dying daughter her 10 o’clock pain meds but gets no response, until she starts screaming to the nurses: “GIVE MY DAUGHTER HER SHOT!” – and they do.

      Needing to squawk shouldn’t EVER be the only way to finally be heard.

      Take care, stay safe… ♥

      Like

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