by Carolyn Thomas ♥ @HeartSisters
Take it from me: the only thing worse than a heart attack is being misdiagnosed and sent home from hospital while you’re having it. And for women in particular, this is a tragically all-too-common reality. Research on cardiac misdiagnoses reported in The New England Journal of Medicine(1), for example, looked at more than 10,000 heart patients (48% of them women) who had gone to their hospital Emergency Departments with chest pain or other significant heart attack symptoms. Women younger than 55 were SEVEN TIMES more likely to be misdiagnosed and turned away from the E.R. than their male counterparts.
The consequences of this reality for women were enormous: being sent home from the hospital in mid-heart attack doubled their chances of dying.
Some of the most popular cardiac misdiagnoses that heart attack survivors have told me about include physician guesses like indigestion, menopause, stress, gall bladder issues, exhaustion, pulled muscles, dehydration and more. But perhaps the most distressing misdiagnosis to trip from the lips of an Emergency Department physician is “anxiety”. This one single word is instantly both dismissive and embarrassing. And worse, to have the diagnosis of “anxious female” recorded permanently on a woman’s chart virtually guarantees a definitive psychiatric stereotype for all future medical visits.
Kathleen is one woman who knows what it’s like to be saddled with that “anxious female” tag. After surgery to remove a brain tumour, she wrote me in April from Oakland, California to share her own experience of being so labelled:
“I discovered that my original primary doc had added ‘anxiety’ to my official list of conditions back in 2005. I was severely hypothyroid, it turned out, with a TSH of 11.2, but he never reconsidered his ‘anxiety’ diagnosis, which, from that day forward, was at the top of my medical record.
“And that diagnosis isn’t just a comment: in my medical record, The Problem List is the very first thing every single doctor sees, after my name and file number, and (being an alphabetical list) ‘anxiety’ is at the very top.
“When I began to search for another doctor, I was unaware that this diagnosis would follow me. I have no doubt that it set the stage for the references to ‘anxious female’ that then appeared throughout my HMO files.
“My medical history is long and complex, including an ominous family cardiac history on both sides as well – certainly not suitable for docs who like easy cookie cutter diagnoses.
“I am convinced that ‘anxiety’ has been an obstacle to my appropriate diagnosis and treatment.”
In 2008, the disturbing results of a Cornell University study(2) called Gender Bias in the Diagnosis, Treatment, and Interpretation of Coronary Heart Disease Symptoms were presented at a scientific meeting hosted by the Cardiovascular Research Foundation. The study examined whether physicians tend to evaluate heart patients differently despite comparable symptoms and risk factors – based only on their gender.
The study’s results might seem distressingly familiar to any woman who has ever been (mistakenly) told, as I was: “It is NOT your heart!” by those with the letters M.D. after their names.
Half of the patient charts used in this study indicated that a patient had recently experienced a significant life stressor and that they appeared anxious. Each physician read one version of the record and was then asked to specify a diagnosis, make treatment recommendations, and indicate the probable cause of the described symptoms.
Results showed a significant gender bias when heart disease symptoms were presented in the context of stress, with fewer women receiving coronary heart disease diagnoses (15% vs 56%), cardiologist referrals (30% vs 62%), and prescriptions of cardiac medication (13% vs 47%) compared to the men.
Researchers also found that the presence of stress shifted the interpretation of women’s chest pain, shortness of breath and irregular heart rate so that these were thought to have a psychological origin.
By contrast, men’s identical symptoms were perceived as cardiac whether or not emotional stressors were present.
As Dr. Alexandra J. Lansky, director of the Women’s Health Initiative at the Cardiovascular Research Foundation said at the time:
“We know that there is a delay in diagnosing coronary heart disease in women, and this study is an important step forward in understanding why.”
The trouble is, dear readers, there are very few experiences in life more anxiety-producing than fearing you might actually be experiencing a heart attack.
Unless you present to Emergency in a coma, in fact, my guess is that most of you would certainly be displaying clear signs of extreme anxiety while in the throes of a cardiac event.
So if you’re a woman, you might be alarmed to learn that this study’s results predict that your heart attack symptoms are significantly more likely to be misinterpreted as merely stress-related compared to men with the same symptoms. And then, on top of physically distressing cardiac symptoms, you’ll also be suffering profound embarrassment and shame over “making a fuss about nothing”.
As another of my readers explained:
“For 10 years before finally being correctly diagnosed with atrial fibrillation, I experienced: palpitations, pounding heart and accelerated heart rate, sweating, trembling/shaking, shortness of breath, chest pain/discomfort, feeling dizzy and lightheaded, and fatigue. My inexperienced (and former) PCP was convinced the symptoms were due to anxiety, and a young cardiologist was quite dismissive (those pesky “women of a certain age”).
“Eventually my episodes were so frequent that A-Fib was captured on an ECG. Years later, I pulled my medical records and read that the 28 year old PCP had written I had ‘magical, mythical thinking’ about my health.”
What can women do about this systemic gender bias? Here’s what our patient Kathleen reported that she has done since discovering that “anxious female” descriptor in her own medical records:
“I have called those docs on their use of that ‘anxious female’ label and will NOT accept explanations like: ‘It’s really not what you think. Anxiety is normal in a setting like this’ or ‘That’s my way of saying that a patient needs a little extra time…’
“I sent several relevant links to one of those ‘anxious female’ docs who was humoring me. When I told him that a growing body of research shows that these biases and labels are detrimental and dangerous, he said he would be interested in references. Perhaps he is humoring me this time too, but I gave him a bunch – including a link to that New England Journal of Medicine study reported here on Heart Sisters.(1)
“A false ‘anxiety’ flag on my chart does not help me.“
♥
UPDATE: See Kathleen’s comment (below) in which she tells us: “I would like to report that ‘Anxiety’ has been removed from my official Problem List, finally. Past records will not be changed, but it no longer tops my records. I’m still working for educational discussion of this experience, to reduce likelihood of others suffering from the same error and dismissal.”
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© Carolyn Thomas ♥ Heart Sisterswww.myheartsisters.org
Q: Have you been mistakenly labelled an “anxious female” during a serious health crisis?
NOTE FROM CAROLYN: I wrote much more about both misdiagnosis and anxiety 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 the code HTWN to save 20% off the list price).
See also:
Hysterical Female? Just Anxious? Or Heart Attack?
How Does It Really Feel To Have a Heart Attack? Women Survivors Tell Their Stories
Stupid Things That Doctors Say to Heart Patients
“It’s Not Your Heart. It’s Just _____” (Insert Misdiagnosis)
.
(1) Pope JH et al. “Missed diagnoses of acute cardiac ischemia in the emergency department”. N Engl J Med. 2000;342:1163-1170.
(2) Chiaramonte G et al. “Gender Bias in the Diagnosis, Treatment, and Interpretation of CHD Symptoms”. Cardiovascular Research Foundation. 2008, October 12. ScienceDaily. 2008/10/081012121314
Heart Sisters 
Are there any support groups for women who have gone through this? I am traumatized by the medical system and really need someone to talk with.
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Hello Flower – you don’t say if you’re a heart patient of not. If you are, check out the WomenHeart Connect online support groups for women with heart disease. It’s free, open 24/7. several sub-topics to browse to comment or ask questions. Best of luck… https://www.inspire.com/groups/womenheart/
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It happened to me last Oct through November (2018). I was told to get more exercise and given prescriptions for antidepressants which I refused to take. Finally went to my husband’s cardiologist from years ago. I was immediately referred for an angiogram.
In less than 24 hrs I had a stent in the LAD 80% blocked.
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Yikes! Beverly, “get more exercise and take antidepressants” was just not going to open up that 80% coronary artery blockage! Hope you are feeling much better these days…
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My doctor is doing this to me right now – forcing me to go see a psychiatrist before attempting to address my extremely onerous physical symptoms that directly affect my ability to live every single second of the day – and I have no idea how to deal with it.
I had horrible facial pain about two years ago. I walked into urgent care, the intake nurse glanced at my record, and told me to go back on antidepressants. The visit took five minutes. I dealt with what turned out to be an abscess in my face for months afterward.
I’m terrible at advocating for myself and I leave my PCP’s office frustrated to the point of tears every time, but I feel like it’s out of my hands now that my record has mental illness stamped all over it.
It’s absolutely unacceptable that this is still the norm in 2018.
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Leila, your abscess story sounds so dreadful! I think you’ve managed to hit the nail on the head however, when you write that “I’m terrible at advocating for myself”. The more you repeat this belief to yourself, the less you will consider yourself able to get the respect and attention you deserve. You CAN be a good advocate for yourself, but you just need to figure out the most effective way to make that happen. You might, for example, try to figure out a new way to approach your physician (i.e. not doing whatever you’ve been trying up until now that has not worked for you). If you’ve haven’t written down a clear and concise list of your top 3 concerns, try that. If you haven’t brought a friend or family member in with you before for moral support, try doing that. All of this is only “out of your hands” if you give up. Hang in there…
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Leila, the nurse practitioner told you to take antidepressants for an abscess! This is a clear and concrete example. It’s enough.
It’s not okay that women have so many extra hurdles, but self advocacy is a necessary skill that most of us learn under fire. When I present a problem, I assemble evidence and make notes for myself: What do l want the practitioner to understand? What are the options? What do I want?
I feel more confident if I set that for myself in advance. As I said to my “anxious female” doc before I divorced him, “I know when something is wrong I don’t always know exactly what it is. But you didn’t take me seriously.”
Within a year after leaving his practice, I was diagnosed with 3 serious conditions that I had been reporting for years.
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Thank you for adding this, Kathleen! Yours is a concrete example of somebody who not only had been mislabeled as “anxious” but managed to successfully get that label removed from your charts!
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Oh, yeah, my “stress” and “anxiety” has manifested itself in a series of TIAs the last few years, and no relief of constant migraine pain.
When you’re a kid, it’s “growing pains,” when you’re a teen it’s “adolescent anxiety,” when you’re a young mum it’s “housewife syndrome” or “post-partum depression,” and after that it’s “menopause” or “mid-life crisis.”
Beyond that, it’s “dementia” or anything they can come up with to avoid admitting that they don’t know what the $&@% to do with you. Meanwhile, pass the painkillers and bill my insurance. I sometimes *hate* doctors. Complacent ones, anyway. Gosh, I sure do hope this IS just indigestion …
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Well said, Jody. It’s almost as if there’s some kind of unwritten umbrella code for interpreting puzzling symptoms, and it’s called anxiety. This theme reminds me of one of my blog readers who asked her physician (after he recommended anti-anxiety meds) if the drugs would help her carry the laundry basket up her basement stairs, because right now she was unable to do that anymore…
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I forget to mention the heart-attack wasn’t your norm either. After having the attack, I passed out for two or three days. I awoke with a breaking fever and called 911. The paramedics assumed it was the flu and threw a mask on my face. Just what I didn’t need – another layer of cloth to obstruct limited breathing. After explaining the unusual past with my heart to the physician, he checked for a heart attack … Which it did indeed confirm.
Mask removed – what a relief!
The blackout and fever which isn’t normal for most people had something to do with the long misdiagnoses.
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Yikes! You passed out “for two or three days”?!!!
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I can relate to your stories. I was 27 or 28 when I awoke with a heart that was beating like it was ready to explode. I remember running to my doctor who immediately dismissed it as anxiety. That was in 1985.
My gut told me he was wrong so I set out to seek a second, third, fourth … up to eight different opinions. Heart disease didn’t run in my family nor did I know anyone who had heart problems. After eight different doctors … even I started to consider the diagnosis of anxiety.
I also made numerous trips to the ER. I want to mention no physician ever did an EKG and other than the ER, no one ever listened to my heart. The overwhelming response was based on my age. I was too young to have heart problems. Doctors were way more bias or stupid than today. I know that may sound a bit harsh.
For over twenty years I suffered from a rapid heart beat, shortness of breath, chest pains and fatigue. After awhile the abnormal became my norm.
It wasn’t until I was diagnosed with kidney stones (22 yrs later) that my heart became an issue again. During a post-op examine a team of physicians came flying into the room. I wasn’t sure what was wrong but they continuously asked how I felt. I assured them I was fine and of course wanted an explanation. They couldn’t give me one but sent me to a cardiologist the following morning. They also refused the surgery but took more EKGs.
At nine am the next day I’m hooked up to an EKG at the cardiologist office. Within a minute he comes flying in like it was an emergency. At this point I was demanding an explanation but he’s more concerned with “how I was feeling”. After assuring him I was fine he then explained every EKG confirmed I was having a stroke … eight in all. He went on to say that I should be feeling this and was in disbelief that I wasn’t. After speaking with me awhile … he did believe I felt fine and this was probably my normal.
As incredible as this must sound, it’s a perfect example of how abnormal becomes the norm. Later I learned that my heart was permanently damaged from years of this misdiagnosis. Within a few years I had a predicted heart attack. There’s still more to do and decisions to be made. Certainly not a future l look forward too.
My advice is to always follow your gut. Always research your treatment and never be afraid to disagree. You have an advantage that wasn’t available to me … the internet. If needed switch doctors, find one willing to negotiate and not dictate. My biggest regret is not trusting myself. After all, you live in your body, not your doctor.
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Lauren, this statement of yours really hit me: “After awhile the abnormal became my norm.” I suspect that this reality is very common, especially when experts with the letters MD after their names tell us our symptoms are NOT caused by what we think is the culprit!
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Thank you! We are the only ones living in our particular body, and, as you show us so well, it is especially dangerous for a malfunction to become ‘normal’.
It’s serious that most MDs are oblivious to their own biases. Recently a doctor told me that she thinks that “…most women tend to be ‘worried well’,” while men ignore their problems until unbearable.
The story of a friend and coworker reminds me of yours, though he was one of the latter. He had passed out and was taken to the ER, where they came rushing over to ask him about his cardiac meds. His heart was racing between 180 and over 200. He smiled. “No meds. That’s about what it does. Oh, since the early 1970s.”
He had simply lived with it. Only his heart damage, like yours, was permanent.
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Hello Kathleen – I’m betting my next squirt of my nitro spray that the doctor who has already decided that “…most women tend to be ‘worried well’, while men ignore their problems until unbearable” tends to diagnose her patients in precisely that order. So her male patients don’t have to fight to be believed, but her female patients do.
Your co-worker’s example is a classic – he just somehow got used to living with what turned out to be a medical emergency. He’s so lucky he passed out that day…
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