Dear Carolyn: “I couldn’t tell if my pain was ‘normal’.”

by Carolyn Thomas     @HeartSisters

I happen to have a pain specialist in my family:  my darling 6-year old granddaughter Everly Rose, who studies her assorted owies very seriously. She updates me at each visit on how every scratch, scar or scab is coming along, rating the pain that each injury caused her on the playground, at summer day camp, or while playing with Homie, her cat. 

I, on the other hand, am apparently keen on NOT making a fuss, no matter what – yes, even the chest and left arm pain that continued during my own misdiagnosed heart attack.

One of my Toronto readers told me recently about the time that she too could not bring herself to describe her pain as pain.  As part of my occasional “Dear Carolyn” series of reader narratives, I’m sharing her story here. Notice how many times she avoids revealing her true pain:       .          .  

 

 

“I’ve been reading your blog for years since my mom had heart surgery. Today, I’m writing to you because of your blog post where you noted that women might not use the word “PAIN” when relating symptoms.

“I had a medical procedure today (non-cardiac) that did not go as smoothly as anticipated. The doctor and nurse had to switch tactics a few time to get the diagnostic procedure to work. It is done with some freezing but no anaesthetic. Suddenly, I felt extremely uncomfortable. Not in immediate acute pain, but rapidly shifting sensations that were all bad and all over the place.

“I exclaimed: “Whoa! Oh! Well!” – and then said things like:

  • “That’s interesting!”
  • “That’s a little alarming!”
  • “That’s not fun!”
  • “That doesn’t feel great!”

“When they asked me “What are you feeling?”, I said:

“I feel really uncomfortable, like I’m filling up with fluid, there’s pressure—“

“And then I remembered your blog post, and I thought, “Do I feel PAIN?”

“Yes, of course I did!   It was just part of the overall “what the heck” overwhelmed feeling. So I added, “—and pain” to the list of things I was feeling, so that they would know.

“They offered to stop the procedure, but I felt unsure, because I could suffer through and I couldn’t gauge what was normal.

“They said “If you can hang on, we’re almost done” – and I thought that, by that point, if I didn’t SEEM to be in a bad state to them (they had been pretty great all along), I could hang on and try to relax.

“I figured if I got worse, they’d have to deal with it then and there. Luckily everything went well after that (knock on wood), and I’m now home, writing to you.

“I find it so interesting that I was attempting to not complain and not seem weak, and to appear stoic – which meant, of course, that I was not accurately describing symptoms.

“Because the word I used after to describe this experience to my husband was… “brutal!”

“How we (all of us) communicate is SO important.”

I love this important story!  It’s such a good reminder:  YOU KNOW YOUR BODY! You KNOW when something is just not right. And you know PAIN! 

Yet, as this reader astutely recognized, she was trying not to complain or seem “weak”, which meant, of course, that she was NOT accurately describing her symptoms to the doctor and the nurse. I cringed at the part when she believed that if she didn’t seem to be “in a bad state” to the doctor and nurse, then it must not be that worth mentioning. 

But her doctor and the nurse weren’t the ones undergoing the procedure and experiencing that pain.  SHE was! 

Researchers  – like Dr. Catherine Kreatsoulas at Harvard, for example – have found that woman are significantly more likely than our male counterparts to minimize symptoms and to avoid the word “pain” – even when describing  painful heart attack symptoms.

This reader’s experience also brings up the tricky subject of inadequate pain management in women. Was she offered anything besides “some freezing” to help manage the pain of this procedure?  How “bad” does “bad” have to be?  See also:  When you fear being labelled a “difficult” patient

And as Casey Johnston once observed in her Outline column:

“If men had to get IUDs inserted, they’d get epidurals and a hospital stay.”

We know how important it is to be taken seriously when we report symptoms to health care professionals. We also know that gender bias is alive and well throughout medicine.* This means women are more likely to have two problems for the price of one when we’re communicating symptoms:  the medical issue or test or procedure itself, plus the likelihood that serious symptoms might not be believed. This reality explains why minimizing our symptoms is dangerous for women.

Take chronic pain, for example: 70% of the people living with this kind of pain are women. And yet, 80% of all studies on pain management are conducted on males – both the mice in the research lab and the (white, midddle-aged) human research participants. And what researchers believe to be true for those male lab animals (or those white, middle-aged men) may or may not be true for women.  We simply cannot know for sure while women are being under-represented in clinical trials.

One of my favourite examples of this bias is a story one of the women in my Heart-Smart Women presentation audiences told us about a conversation she overheard  in the Emergency Department between the Emerg doc and the male patient in the bed next to hers:

“All of your test results came back ‘normal’, but we’re going to admit you for observation just to make sure it isn’t your heart.”

Thus yet another (white, middle-aged) male is treated according to current heart attack treatment guidelines, while I and countless other women presenting with distressing symptoms but “normal” diagnostic tests are patted on the head and sent home with misdiagnoses ranging from anxiety to acid reflux to menopause (a great all-purpose misdiagnosis, by the way!)

I now often warn women that the five most dangerous words during a heart attack are:

“Maybe it will go away . . .”

In my book, A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press), I wrote about about cardiac diagnostic issues (including more about Dr. Kreatsoulas’s research on how the way women typically describe cardiac symptoms may in fact interfere with getting an appropriate diagnosis).

I also included these tips for assertively communicating your symptoms to physicians:

  • Adjectives are important.  Get right to the point, but use strong descriptive words like dull, throbbing, intense, burning, tingling, heavy or piercing if appropriate. There’s no such thing as pain that is “a little alarming”.
  • Do NOT minimize your symptoms. Don’t be like Elizabeth Banks in this must-see 3-minute film in which she responds to the 911 dispatcher (who has just asked what her symptoms are): “Nothing really. Just a little nausea, jaw tightness, shortness of breath, dizziness, pressure in my chest. . .”  If you think you might be having a heart attack, say out loud and clear, I think I might be having a heart attack!”
  • Describe how symptoms change your daily life or ability to function. Don’t just say you feel “tired” – talk about specific changes in your day-to-day life (“No longer able to carry the 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. Record the date/time of day/ what you were doing/eating/feeling in the hours leading up to the onset or worsening of symptoms, e.g. ‘Chest pain far worse when I walk up our steep driveway.”  A pattern can sometimes emerge in such a journal.
  • Be insistent about your symptoms if it feels like your physician isn’t getting it.  Do not self-diagnose (e.g. “Could this just be a pulled muscle?”)  Think of yourself as a news reporter: your job is to clearly communicate the FACTS as you are experiencing them.
  • 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!  Keep going back if things still feel worse. Do NOT be embarrassed to death.

Q:  Can you relate to this reader’s repeated insistence that her pain was NOT pain?

NOTE FROM CAROLYN:  There’s pain – and then there’s pain! I wrote a lot about cardiac pain in my book A Woman’s Guide to Living with Heart Disease.  You can ask for this book at your local 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 when you order).

SEE ALSO:

* Two of my favourite books on the history of women’s health care are Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick  (by Maya Dusenbery) and Invisible Women: Data Bias in a World Designed for Men (by Caroline Criado Perez – winner of the 2019 Royal Society science book prize).

-other Heart Sisters blog posts in the “Dear Carolyn” series

Cardiac research and the mystery of the missing facts

Stroke survivor Sharon Dreher: “Don’t use a 1-10 pain scale on women who have delivered a baby”

Post-stent chest pain

When you ignore pain because you’re used to it

The freakish nature of cardiac pain (Part 1 of my 3-part series on pain)

7 thoughts on “Dear Carolyn: “I couldn’t tell if my pain was ‘normal’.”

  1. Just an additional comment. For those who might be considering getting the Kardia App I mentioned for their phone: It CANNOT diagnose a heart attack or ischemia. It provides a very limited view of the heart and is reliable for changes in heart rate or rhythm. You can create a pdf of a 1 minute EKG strip and email it to Your cardiologist. Which can be very helpful if you have atrial fibrillation or other rhythm issues.

    Liked by 1 person

    1. Thank you Jill for clarifying that important limitation of self-tracking cardiac monitors like Kardia, AliveCor, etc (or what Alexandra Carmichael of CureTogether calls “instruments of self-torture”). In some cases, these wearable trackers *can* identify potential heart rhythm issues, but there can also be a very real downside. A study published in the Annals of Internal Medicine found that the performance of all heart rate trackers that researchers evaluated was deemed “relatively poor” compared to EKG readings. I wrote more on how these trackers can actually make us feel worse (not reassured, as the marketing hype promises) in “Can Self-Tracking Drive You Crazy?” I wrote this after Hugo Campos, a well-known patient advocate I met in 2012 who wears an implantable defibrillator in his chest, started tweeting his AliveCor heart rhythm readings to the world one night as he was becoming increasing alarmed by his own PVCs.

      Thomas Goetz described this conundrum so well in The Atlantic in his article, “The Diabetic’s Paradox”. For decades, people living with diabetes have been the world experts in constant self-monitoring, yet often describe this task as a “troublesome burden”, as Goetz wrote: “Self-monitoring for diabetes is an unremitting and unforgiving labor, and the combination of these creates a constant sense of anxiety and failure.”

      Again, I’m hopeful that your recent Kardia readings reveal only benign results, and that your stress test tomorrow will go well.

      Like

      1. I agree! Being an ICU nurse can amplify all this…LOL.

        I have a rule that I check my EKG once a day or if I have troubling symptoms. A few years ago, grabbing my phone after a couple near-syncope episodes revealed a temporary heart rate of 180. Capturing these episodes got me diagnosed and treated without having to wear an event monitor…. hoping to “catch” an episode.

        So it can be a blessing or just a cause for anxiety, depending on how you use it and how you react to it. As an RN, who can read EKGs, it just mostly serves as data to me, like BP and blood sugars.

        By the way, I now have a continuous glucose monitor which definitely gives me less stress than having to stick my fingers 4 times a day!

        Liked by 1 person

  2. Hi Carolyn,
    In your article you say “You know your body…You know when something is not right”

    I find this part … “something is just not right” Much harder to describe or explain than actual pain.
    Even in heart disease… without pain…I have felt strange sensations or “impending doom”. Currently, I am experiencing a lot of PVCs (Premature Ventricular Contractions) extra heartbeats per my Kardia Iphone monitor). They aren’t causing pain, feeling skipped beats is weird but easily ignored. But not knowing the cause of this change in my heart is distressing.

    So I asked my Cardiologist directly… “Can this increase in PVCs be a sign of ischemia?” He said “Normally we would have you wear a Holter monitor and measure the ‘PVC burden’ on the heart. However, in your case, the question of ischemia came to my mind also. How do you feel about having a pharmacological nuclear stress test?”

    I had a strange reaction to this…tears came to my eyes…Maybe because I felt heard??? Testing scheduled for tomorrow.

    Liked by 1 person

    1. Hello Jill – so true! Pain is pain – we can point to the painful spot and say “HERE is where it hurts”. But we can’t point to a “sense of impending doom”, which may explain why few physicians would pay any attention to that distressing yet surprisingly common cardiac symptom.

      Imagine feeling emotional because a doctor actually heard you!? That’s awesome. Good luck in tomorrow’s stress test – hope the results will be uneventful!

      Take care, stay safe. . . ♥

      Like

Your opinion matters. What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s