by Carolyn Thomas ♥ @HeartSisters
When I was sent home from the Emergency Department with a misdiagnosis of acid reflux, I felt horribly embarrassed that I’d made such a fuss over nothing (well, nothing but textbook heart attack symptoms like chest pain, nausea, sweating and pain radiating down my left arm). It then took me two full weeks of increasingly debilitating cardiac symptoms before I forced myself to return to that same hospital, desperately ill yet still not completely certain this could be heart-related. After all, hadn’t an Emergency physician with the letters M.D. after his name told me quite emphatically:
“This is NOT your heart!”
It was only when my symptoms became truly unbearable that I knew I had to go back to the E.R. This extreme reluctance to get help is what doctors call “treatment-seeking delay“ behaviour, and in the middle of a heart attack, it can be a deadly delay. We already know that the average person in mid-heart attack will wait four hours before getting medical help. Why? One reason may well be that we’re too simply too embarrassed to attract attention to ourselves during a heart attack.
I wanted to share with you this email conversation, with their permission, between two health care professionals. One is an American, Dr. Angelo Alonzo, director of the Yale Heart Study; the other is Len Gould, an Australian psychologist who runs a cardiac rehabilitation program for heart patients – and more importantly, is a heart patient himself who has undergone bypass surgery.
Their topic: people who are too embarrassed to seek emergency medical help even when experiencing heart attack symptoms.
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Sent: January 25. 8:59 PM
From: Len Gould To: Angelo Alonzo cc: Carolyn Thomas
Subject: Yale heart study
” I found a reference to your work at Yale University on the Heart Sisters site run by Carolyn Thomas. I keep in touch with Carolyn as I am interested in her work and admire her greatly. Since I am referring to her site, I am copying this correspondence to her.
“I am a psychologist who runs a cardiac rehabilitation workshop for heart patients. Being a heart patient myself, I took up this work after my bypass surgery 16 years and five months ago – hey, who’s counting? 🙂
“Only last night, I was running a session where a group member told me that he had not called the ambulance while experiencing heart attack symptoms at work because he had been “embarrassed”. He did not want to be embarrassed in front of his workmates!
“We may consider this odd, but I have been in a similar situation, and so too have many of my audiences over the years.
“It is not only the patients who need re-education, as many partners or friends often make fun of people who call for help when it is finally determined that the symptoms were not heart-related.
“For example, a colleague of mine recently had chest pains and went to the local emergency ward (as he should). However, a number of people have since told this story as “Bill’s little attention-seeking episode”. Naturally, this will impact any future decisions he makes as to
whether to be checked out or not.“Getting the balance right between identifying symptoms as heart-related and calling for help, versus doing nothing on the assumption that they are not heart-related, is a very perplexing situation that many heart patients find themselves in. I often say:
“Before a heart event, every chest pain is indigestion; after a heart event, every chest pain is a major heart attack approaching.”
“Sadly, it is almost impossible to know the difference.”
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Sent: January 26. 10:30 PM
From: Angelo Alonzo To: Len Gould cc: Carolyn Thomas
Subject: Yale heart study
“After Carolyn posted about the Yale Heart Study on Heart Sisters, we had a very nice spike in participation, for which we are indeed grateful.
“All of the experiences, responses and feelings you note are definitely part of my own experience too after 40 years of working on cardiac care-seeking delay. Embarrassment is certainly a large element of the equation, and it repeats itself in each study I have conducted as well as in the delay literature.
“Finding that balance between the “worried well and the walking sick” is very difficult; almost everyone I have interviewed has struggled with balance while fearing embarrassment and, as you point out, other pejorative labels.”
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Here’s how cardiologists at Cleveland Clinic explain why timing is everything when it comes to being too embarrassed to seek immediate medical care for heart attack symptoms:
” When an acute myocardial infarction (heart attack) occurs, there is a limited amount of time before significant and long-lasting damage is done to the muscle of your heart.
“If a large area of the heart is injured during the heart attack, full recovery becomes much more difficult. To obtain the greatest benefits of emergency care, anyone who thinks they are having a heart attack should get to the hospital within one hour of the onset of symptoms. The sooner you get to the E.R, the sooner the appropriate treatment can begin, meaning the lesser the chances of permanent damage.
“Sadly, only one in five patients actually gets to the hospital within this time frame. Therefore, many people who survive the MI are unnecessarily left with large portions of the heart scarred by the heart attack. This decreases the heart’s ability to pump blood effectively.
“Such patients may experience lifelong problems such as shortness of breath and angina (chest discomfort). Patients are also at an increased risk of developing heart failure, in which the heart weakens progressively over time.”
Their best advice about whether or not you should call an ambulance for immediate help when experiencing cardiac symptoms?
“Don’t be embarrassed to death!”
♥
NOTE FROM CAROLYN: I wrote much more about many kinds of treatment-seeking delay behaviours – like being too embarrassed (or too busy!) to call 911 during a heart attack – in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it 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 30% off the list price).
See also:
“Knowing & Going: act fast when heart attack symptoms hit
Downplaying symptoms: just pretend it’s NOT a heart attack
Slow-onset heart attack: the trickster that fools us
Three women, one heart attack and a sound asleep husband
Getting help during a heart attack: ‘delayers’ vs ‘survivors’
How women can tell if they’re headed for a heart attack
How does it really feel to have a heart attack? Women survivors tell their stories
.
Heart Sisters 
I worry about going in because I’m made to feel like a bother to the doctors and nurses. I have never had a heart attack or heart disease but my grandmother had her first heart attack at 40 and my mom had her first cardiac event in her 30’s. My doctor said I don’t need to be followed at this point. I’m 42. It scares me.
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Though I experienced a coronary artery spasm at 2 AM this morning and I still don’t feel well (it is now 7:30 AM), I remain embarrassed to call 911. In fact I have several reasons which make very good sense to me:
– My cardiologist told me I cannot possibly have a blockage because I passed the echo stress test with flying colors.
– I was just at the ER with chest pain and they unceremoniously sent me home.
– I have a new job and I have to be at work today.
– I have no one to take care of my sick cat.
– I don’t want to be told yet again by the ER docs and nurses that it is “all in my head.”
– I keep waiting for my symptoms to go away.
Can anyone relate?
Gerri
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Gerri, I can relate! You have nicely itemized a comprehensive list of the most popular reasons for NOT going to the ER on any given day! I think I used several of them during those two weeks I spent not going back to the ER after being misdiagnosed with acid reflux… That fear of being humiliated (yet again) for wasting their time and being dismissed is pretty powerful, not to mention all those things in life that are more important than going at this particular moment.
However, you know I am going to advise you that five and a half hours of spasm pain is not normal, and deserves at the very least an immediate doctor’s appointment in order to take steps to treat these symptoms.
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Thank you Carolyn and Elisabeth for taking the time to respond and for your concern. I have both an appointment with my PCP and a cardiologist within the week. I have also been doing some reading and although I don’t mean to self diagnose, but on the other hand, I want to be an informed person especially as a woman with potential heart issues and be an advocate for myself. I think that one possibility might be Prinzmetal’s Angina. Carolyn I realize that you are unable to comment because you’re not a physician. In my readings I came across the fact that this condition is more likely to occur if one has migraines (I have SEVERE migraines) and Raynaud’s Syndrome and I have both.
Right now I am concerned that because I have a history of psychiatric illness – the key word here is history – that any new physician I see, like the cardiologist – will fail to take me seriously when he sees the plethora of medications I am taking. Right now my main concern is that I will have a third “episode” in an unfavorable situation – like when I am driving.
Thank you again for hanging in there with me.
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Great news about your two upcoming appointments! I too have read about a possible link between coronary spasms and other vasospastic disorders like migraines or Raynaud’s. I hope that your physicians are able to listen closely to your recent symptoms without resorting to labels that may dismiss those symptoms based only on past diagnoses – unfortunately a common scenario in medicine. Best of luck!
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Andrea, I’m relieved you’ve secured appointments. I strongly suggest you find a friend to take along, right into the consulting room, to provide moral support and reinforcement and to take notes. The two-against-one dynamic will work in your favor. (Best is if you can take a guy in a suit, who will automatically counterbalance any male doctor’s tendency to dismiss a woman patient.)
I also suggest you type up your questions triple spaced (which leaves room to jot notes), print out copies for yourself and the doctors, and present a copy to the nurse or PA who shows you into the consulting room. It has worked for me to say, “Here’s a list of what I’d like to discuss with Dr. X, today. Can you please be sure he sees it first thing?” In my experience, staff members are usually happy to clip it to the outside of the file. When the doctor comes in, you can say something like, “Those notes are what I’d like to discuss today. It’s OK with me if you change the order around and refer me to your PA to explain anything complicated.”
That shows you as prepared, reasonable, and flexible, and that you recognize that his time is very limited. I used to do this most successfully with my daughter’s pediatrician. He quickly got used to it and seemed to like it, in part because he could easily pace himself: He would gallop in and say, “OK, what have we got?” Then he would hunker down, read my notes fast, make check marks and circles, and say something like, “No to 1 and 4; 2 and 5 are really the same thing; and yes to 3 and 6, but I’ll explain.” It was super efficient!
Some doctors will balk but may loosen up after the first or second time you try this method. Cardiologists are notorious for big egos and abrasive bedside manner, so try to have a thick skin. Remember that you’re hiring the guy for his expertise, not his personality. Concerning your “plethora of medications,” you may want to consult a pharmacist about possible drug interactions causing or exacerbating your symptoms. Pharmacists are the experts on this topic and are usually happy to help, if you just ask them in advance when a convenient time would be.
Regarding driving, be sure you know where your “hazard” light switch is located (the double blinker marked with a triangle) and practice reaching it in a hurry, just in case you have to stop in the middle of traffic. Best of luck!
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Carolyn, just read this post and it is relevant to my current situation. I was at the ER yesterday (drove myself because I was too embarrassed to call 911) for chest pain radiating to my neck and back, down my arm, shortness of breath, with fatigue, nausea, palpitations and I had edema for the last several days. All tests came back normal.
Today I was sitting watching television and got hit with crushing chest pain, much worse than yesterday, radiating to my back and jaw. I was doubled over and crying. (I live alone.) I had the phone next to me, thinking about calling 911 but I was too embarrassed to return to the ER and make a fuss over what was probably nothing – yet again.
The pain has lessened but I’m left shaken and confused. I hate those looks you get from the nurses and the doctors in the ER like you’re crazy when the results come back normal. What’s a woman to do?
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Hello Andrea – pretty frightening symptoms you’re describing. I’m not a physician so cannot comment specifically on them, of course, but I can tell you quite accurately: pain that is so bad that you’re doubled over and crying is not “normal” for anybody. Please call your family physician first thing in the morning and make an appointment. Something is causing you to feel this way, and you need to find out what it is, whether it’s heart-related or not. Never be embarrassed to call 911 – every paramedic I’ve spoken to tells me the same thing: they’d rather come to you for a false alarm than miss the one time you really need their emergency help but fail to call 911! Best of luck to you….
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Andrea, I urge you to put your own life and health above any scorn you believe some of the ER personnel may hold toward you.
First, you don’t really know what any sidelong looks may have meant. (Maybe you intercepted some subtle communication that didn’t actually have anything to do with you, but rather with that person’s co-workers.) Second, I learned from a meditation coach to tell myself, “It’s none of my business what other people think of me.” If I base my actions on whatever I imagine others may think, I’m a mere leaf in the wind!
In any case, you’re describing severe symptoms. What if your tests at the ER weren’t done right? What if your results were mixed up with someone else’s name? Medical mistakes happen all the time! I recommend you call for emergency help and not wait. Something is certainly wrong, or you wouldn’t be doubled over in pain.
The heading of this box into which I’m typing says, “Your opinion matters. What do you think?” But really, it’s YOUR opinion that matters about your own health!
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Nicely said, Elisabeth!
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I am a 62 yr old retired RN. My brother had his 2nd MI @60, CABGx4 age 70. (Canada socialized medicine!) My mama had MI @80, and 2 stents placed.
Recently, I was standing doing dishes and became extremely dizzy. I sat down and my husband said I lost consciousness and THEN VOMITED!! I woke up, w/my chin to my chest and did not remember vomiting. Being an RN, inside my head I thought, “Did I have a TIA?” I DID NOT SPEAK for almost 10 minutes(not like me!)- I did not have any dysphagia, no SOB, no chest or jaw pain. No diaphoresis. I was able to move all extremities, my smile was symmetrical. When I looked in the mirror, my eyes looked “vacant”. I shook my head no when my husband wanted to call 911 (stupid).
I had an EKG the next day WNL and a 24 hour Holter monitor just showed “a few skipped beats- nothing to worry about…” I’m requesting an echo and stress test. I’ve had 3 bouts of hemmorrhagic cystitis (HC) in last 6 months (IVP and CT abd/pelvis ok)- having cystoscope next week -YIKES!
I’ve cut my 20 mg Lipitor in half as I know HC is a 5-8% side effect of Lipitor. Cholesterol 171. Triglycerides 53. LDL 84. (ratio 2.3). Only weird lab was CO2 33. And ALT 31. TSH RFLX 0.01.
My husband said I was confused for 10 mins. When I did talk, my speech was clear. I did not feel that my refusal for 911 was made by an RN brain! I pray this NEVER HAPPENS again. He will call 911 next time. I “chalked it up in my brain” as dehydration. Any comments out there?
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Whoah! They say nurses make the worst patients, and your story helps to explain why! I like to ask women when they tell scary stories like this what they would have likely done had these symptoms been happening to their husband, or daughter, or mother instead of to themselves. Likely your nursing training would have kicked right in, and you would have been on the phone with 911 pronto. If there is a ‘next time, promise me you’ll DO THAT!
Glad you’re getting further testing. Something caused that unusual incident – you just don’t know what at this point. Good luck to you!
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It is really difficult to tell if your symptoms are severe enough to call for help. It is a risk waiting for the pain to be relieved by its own. It usually doesn’t happen. If it is a spontaneus spasm it may relieve after some minutes but if it comes back again and again, this may be a warning sign. The hospitals have a lot of work to bother them by a possibility of having a heart attack.
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You’re right, Stella – it can be very difficult to tell the difference between symptoms that mean heart attack and those that don’t! That’s why so many (women especially) are misdiagnosed in mid-heart attack. My advice now is this: you know your body. You KNOW when something is “just not right”. Take action if the symptoms do not feel “normal” for you.
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Carolyn, last week my dad’s 77-year-old wife called the ambulance after she had unusual chest pain. Though it actually turned out to be severe heartburn (they kept her and ran enzyme, etc. tests), I was so gratified when she told everyone she called because of what she learned from my heart attack. And she didn’t feel a bit silly about doing it. Yessss, you go girls! 🙂
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Great story, CJ! One of the few perks of having a cardiac event is when you become a cautionary tale for others to learn from
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Hi Carolyn,
I didn’t wait, I have asthma and I was having the symptoms of an asthma attack. My doctor told me that when I woke unable to breath to just use my inhaler, something in my head told me not to, that something was wrong. I waited from 1am until 7am to call 911 and no one answered. I got my sister to take me, had I listen to my doctor I would not be here. I have massive heart damage.
Robin
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Robin, it sounds like you DID wait – at least six hours before making that 911 call.
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Carolyn, my doctor said it was asthma and not my heart. I was told to use my inhaler to relax my air ways. When I used the inhaler I would fall into a deep sleep, I didn’t use it that night and yes I waited. Asthma isn’t an emergency.
Robin
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Last fall at 42, I survived the “widow maker”. I was in the cath lab within about 55 minutes of the onset of symptoms. I was extremely embarrassed to call, but if I hadn’t, I would be dead. Because of the quick timing, I was fortunate to have very little permanent damage. Always call!
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Great advice, Jodi! Your quick response time is a good role model for the rest of us – 55 minute “door to balloon” time is awesome. Stay healthy…
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Carolyn – This has nothing to do with your current post, so forgive me, but I’ve just read an article recommended by a friend on FB. Here’s the link.
I’m interested to know what you think about it.
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Hi Deborah, yes, I’m familiar with this article. Inflammation is widely considered to be one of a number of likely culprits in heart disease, although Dr. Lundell’s illustrations seem a tad extreme.
It may also be relevant to note here that in 2008, the Arizona Medical Board revoked Dr. Lundell’s license to practice medicine, the fifth of five previous regulatory actions the Board had taken against him. Always helpful to “consider the source” in All Things Scientific.
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