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*, 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 than men of the same age.
The consequences of this 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 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** 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.
“A false ‘anxiety’ flag on my chart does not help me.“
k
© 2012 Carolyn Thomas ♥ Heart Sisters www.myheartsisters.org
Q: Have you been mistakenly labelled an “anxious female” during a serious health crisis?
See also:
- How Does It Really Feel To Have a Heart Attack? Women Survivors Tell Their Stories
- Am I Having a Heart Attack?
- Stupid Things That Doctors Say to Heart Patients
- “But What About The Men?”
It is often construed that a prescription for Xanax or Clonazepam means by definition, that you have an anxiety disorder.
As a heart patient, I find it slows the reactivity of my heart and vascular spasm when stress occurs. The other mislabeling that I discovered was that when I had been interrogated about my history and said, yes, in my 20s, I smoked “when going out to bars with friends”, for 2-5 years, I found that in my chart it had translated to 25 years of smoking! That makes a BIG difference in a doctor’s perception of how you ended up with a heart condition!
Due to my need for the anxio-cardiolytics, I may never lose the anxiety label, but I managed to get the smoker label out of the computer.
Mary, you had a double whammy of both anxiety and smoking on your medical files! As you know, those of us living with coronary microvascular disease can suffer debilitating angina that is as affected by emotional triggers as by physical exertion. That’s where anxiolytics come in for heart disease – not as a remedy for an anxiety disorder.
As a young woman suffering from real anxiety issues, I felt personally hurt by the way that anxiety was so negatively conveyed in this article, as something to be embarrassed about and offended by. Way to support the stigmatization of those with mental disorders.
Amelia, thanks for taking the time to share your comment. Please re-read this article – it’s about anxiety MISdiagnoses in women who present with life-threatening health issues (tragically, a common and potentially fatal medical reality for many women) and is certainly not intended as a reflection of “the stigmatization of those with mental disorders”. The only reason we would feel “embarrassed” and “offended by” an anxiety misdiagnosis is our tendency to feel guilty about making a fuss or angry about being dismissed so dangerously. For example, I felt the same after being misdiagnosed with acid reflux in mid-heart attack – this had nothing to do with stigmatizing those living with gastroesophageal issues.
Not embarrassed or offended either, but glad that you raised this, Amelia.
Mental disorders are stigmatized, not by Carolyn in this column, nor by those of us who have shared experiences here, but in society and, dangerously, by doctors. This column discussed how doctors often dismiss reports and symptoms of serious physical conditions with psychiatric diagnoses. Someone with an accurate diagnoses of Anxiety may very well have heart problems, kidney disease or a brain tumor as well, but many doctors will never see past that Big Letter A, especially if the patient is a woman.
Take it from Jerome Groopman M.D. in his book: How Doctors Think; p. 39:
“…had to avoid the negative feelings that physicians have for patients labeled as “psychiatric,” seeing such people as neurotic, cloying, deranged, and generally delusional, a burden because they do not tell the truth, their physical complaints not worth taking seriously because their symptoms originate not in the chest … but in their mind. A wealth of research shows that patients thought to have a psychological disorder get short shrift from internists and surgeons and gynecologists. As a result, their physical maladies are often never diagnosed or the diagnosis is delayed.”
Certainly not feel-good stuff, but we need to know what we’re up against.
Great article Carolyn. Several years ago I had the misfortune of contracting Lyme Disease which went in to my central nervous system. I had a myriad of symptoms including extreme voice loss. An older Ent specialist immediately diagnosed me as having ‘hysteria.’ I questioned him at length, especially about lab results. He stuck by his diagnosis and insisted that I either didn’t take my meds or the meds were placebo pills!
My family doctor told me I was ‘just looking for something to be wrong.’ !!!!!!
I became severely ill and required months of treatment including several weeks of home iv tx and now have some permanent nerve damage. Hysteria? !!!
When I wrote a letter of complaint to the College of Physicians and Surgeons, I received an answer after a year. The conclusion was that I misinterpreted the subtle medical language and tone of what the doctor said! (I have a medical background to boot! )
“Just looking for something to be wrong.”!!!
As though we actually WANT feeling lousy to be the center of our lives.
I still get flabbergasted at the level from which some of these docs sit in sanctimonious judgment, their readiness to label a patient as hypochondriac. I think it’s even worse if you’re a woman who actually looks pretty good. A number of my HMO docs appeared surprised whenever something I reported turned out to be true, and even significant.
For years I reported throbbing pain behind my right eye and growing pressure headaches, but my feet, hands and shoulder were even more immediately painful and disfunctional, so most of my energy went toward getting those resolved – already quite a fight with my HMO. Only this year did I begin to push to resolve the head pain, and I can easily imagine them saying: “Just looking for something to be wrong” although Anxious Female is what they wrote in my record.
Another point about medical records: As I’ve reported, through a medical error, Anxiety topped my list of conditions and stuck like the tablets of stone. On the other hand, despite the fact that I repeatedly reported radical surgery for cancer in my 20′s, followed by heavy head and neck radiation, no doc thought to add that history to my Problem List. At least, not until 2 weeks before my brain surgery, when a neurosurgeon expressed surprise at that omission and added it to the list. My particular tumor is often caused by radiation exposure, and my history should have been a flag, but it seems that many found it easier to attribute my symptoms to Anxiety.
I recommend “How Doctors Think” by Jerome Groopman M.D. No, we are not the problem, and, yes, we really do have to fight to be heard. Knowing what we’re up against may help us do that more effectively. And sharing these experiences helps bolster confidence, resolve, and our sense of our own worth.
I love Dr. Groopman’s book, Kathleen – should be required reading for all med students AND doctors. More on this at: “The 18-Second Rule: Why Your Doctor Missed Your Heart Disease Diagnosis”.
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.
WOW! That’s great news, Kathleen – thanks for the update, and for sharing your story with me in the first place. A victory for all of us “anxious females”!
Thanks for this, Jan!
In a way, your family doctor was correct, but not in the way it sounded. Patients ARE looking to solve the mystery of “what is wrong with me?” whenever we present to a physician with distressing symptoms. But simply asking that question should not be mistakenly interpreted as anxiety (or hysteria!)
ONE YEAR to receive an answer from the College?!? Unacceptable.
When I was 25 I went to a doctor to report pounding and skipped beats (pounding you could see through my shirt!) The doctor sat me down and told me I missed my mother!
Months earlier my new husband and I had moved across country. He also told me I should go home and have a baby so I wouldn’t be lonely! He never put a stethoscope to my chest even though I told him I was diagnosed with an atrial septal defect at the age of 5.
Fortunately, I did not follow his advice. Months later I was told by my new doctor that if I had become pregnant, both I and a baby would have died. I’m sure my chart in that first doctor’s office said, “anxious female”.
I’m now committed to taking charge of my health and passing that on to women because of that incident. I’ve also learned that the best doctors appreciate and respect women who do take charge of their heath. It creates a team relationship with the mutual goal of quality care.
Thanks for your posts.
Rudy
“Go have a baby!” is odd medical advice to address missing one’s mother. I sure hope med students are learning radically improved bedside manner skills today! Thanks for sharing your story here, Rudy.
Hysterical Woman #1: I drove myself (not too bright I admit, but like most women this couldn’t be ENOUGH of an emergency for 911) to the ER during my first atrial fibrillation “attack”. Not knowing what was happening, I was terrified I was going to pass out while driving; I WAS hysterically crying when I arrived.
The ER doc said he was sending me home with a Rx for Xanax. I looked him in the eye and said “Doctor, I absolutely was hysterical when I arrived. But I assure you I have a depressive disorder, not an anxiety disorder.” He told me to hold on to the Rx, walked away. Before they could unhook me I had a major episode which the nurse caught on tape.
He apologized.
Hysterical Woman #2: I developed major fibromyalgia symptoms in the late 1990′s when fibro was not recognized by the medical establishment and actually was considered an “Hysterical Middle Aged Woman’s Syndrome”. As they now know, it’s a central nervous system disorder so every system of the body can be impacted.
Ten of thousands of dollars worth of tests came back negative proving the medical establishment’s Dx. I lost track of the number of doctors (rheumatologists, neurologists, internists, gastroenterologists etc, etc.) who handed me the cards of psychiatrists.
This is such a perfect illustration, Judith: it’s quite understandable that a woman presenting in the E.R. with terrifying cardiac symptoms would OF COURSE be crying and agitated. Bingo! – instant “anxious female” diagnosis. P.S. Next time, don’t drive yourself to the E.R!
As one of the examples in this post, aside from speaking with individual doctors who had labelled me as an Anxious Female, I began a campaign to remove Anxiety from my list of conditions.
One might think that would be simple, especially since the Anxiety diagnosis of 2005 was demonstrably a medical error and one’s primary care physician has the authority to alter the list. Perhaps not the past, but at least going forward.
When, 2 months after I specifically requested its removal, he still hadn’t done so, I switched to another doctor: a young woman whom a friend had recommended for her brilliance and compassion.
When I met with my previous doctor to explain why I was leaving his practice, he seemed genuinely shocked, and, to me, that confirmed that he really didn’t see the label as dangerous to my health.
I want to advance discussion and awareness of these labels and their implications within my HMO and throughout the broader community, and myheartsisters.org plays a valuable role.
Kathleen
Hello again Kathleen – your story is a good example of how easily a mislabel like anxiety (one that has such significant potential to negatively affect future diagnoses) can stay stuck to one’s medical chart DESPITE a specific request to correct those records. Unbelievable. Thanks for letting me use your story to illustrate this topic.
cheers
C
That is worth remembering whenever we hear pundits lauding universal electronic records as some sort of health care panacea. Useful records will be more easily accessed and shared, true, but also labels and misinformation. Garbage in; garbage out.
I suspect that the problem is less about whether our records are electronic or on a piece of paper in a file folder. Garbage is garbage however it’s created . .
I once called 911 for an ambulance reporting I thought I might be having a heart attack. When the 911 operator asked me if I wasn’t sure it was “just an anxiety attack”, I said, “I’ve already had a massive heart attack you fool. Send a g######m ambulance!”
To me, that’s about as patronizing as it gets.
Beamie
Amazing. 911 operators can apparently diagnose anxiety attacks even over the phone. Lovely hearing from you again, Beamie!
C.
In fairness, I do think some men get labelled by their doctors, too.
Agreed! But as the Cornell study (and others) suggest, females are significantly more likely to be mislabelled compared to their male counterparts. Women also have twice the rate of diagnosed anxiety disorders than males do.