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.”
.
© 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 
I was rushed to the ERIC from work several years ago. I had been having chest pain radiating up my neck into my jaw and also down my left arm for about 5 hours. It got very intense, I had trouble with my vision and, apparently while walking back from the bathroom, lost consciousness. A patient’s family member was beside me when I came to. The chest pain at this point was probably an 8. They called the ambulance. The paramedic gave me a nitro under my tongue. All together, that paramedic gave me 2 nitro before getting to the ER. They gave me the third at the ERIC and then gave me nitro paste. The next thing they did was give me morphine. At that point the nitro had stopped my pain but they gave me morphine over my protests.
The outcome of all this is I still have episodes of severe chest pain but since the cause of my symptoms are unknown (with no testing except for a blood test or 2) I have not gone to be seen and have since (very recently) changed my PCP. Maybe I can get the new doc to listen.
BTW, I collapsed while working at an assisted living facility as a CNA, which I have been for 24 years now. I was until recently also medication certified. As a caregiver who advocated on behalf of my patients, it is very disturbing and disappointing to be labeled as difficult. I have fybromyalgia, 3 herniated discs, anxiety, depression, etc. But I am just as human as they are and I hope they are never treated the way they have treated me.
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Thanks for sharing your story, Fran. This all happened several years ago? Best of luck with your new doctor in getting a full assessment of all symptoms.
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Yes, this happened a little more than 2 years ago. I’ve been very lucky that the chest pain I’ve had since is not as intense. I am cautiously hopeful about this new doc. Thank you for allowing me to vent
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4 years ago I started gaining weight uncontrollaby, was ravenous 24/7, light headed, weak, short of breath. They tested for hypothyroidism which I did have. I still felt awful even after my TSH got back to normal. The useless, arrogant doctor kept blowing me off, screamed at me for refusing anti depressants. I finally tried them, they only made everything worse.
My doctor had referred me to a therapist who told him I did NOT have primary depression, and that anyone who was experiencing what I was experiencing would be depressed too. The MD refused to listen to him. This MD was a 2nd year resident in family medicine. The therapist was a PhD (social work) with 30 years of experience.
I saw so many doctors. What wasn’t from hypothyroidism was antihistamine side effects. No doctor figured this out. They were all rude and dismissive (both male and female). I complained to a gynecologist 16 years ago of excruciating periods, she told me “That’s what’s so wonderful about menopause you don’t have to worry about those things anymore”.
I think blaming everything on mental illness is because so many doctors are lazy and just want easy money. I find it ironic that they shove pap smears and breast exams down our throats but act like no woman has ever had a real health problem.
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Thanks for your comment, Lauren. People living with more than one medical condition (“co-morbidities” in doctor-speak) are often labelled as anxious or depressed. But really, who wouldn’t be? I now believe this is situational depression based on multiple losses and grief – not clinical depression as psychiatrists might define it. See also: When Grief Morphs Into Depression. Re your last paragraph: I think it sounds just as unfair to broadly tar all docs with the same brush (e.g “lazy and just want easy money”) as it would be for docs to dismiss all women patients as anxious or depressed. And we know how that feels, right?
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Carolyn, if it looks and quacks like a duck… Many PCPs today value only rapid diagnosis and treatment. I read that some are even rewarded by the insurance company for lack of treatment, not to mention Big Pharma’s influence, so dismissing a patient with a pervasive “anxiey disorder” label and a pill is becoming our drive-through medical reality. Sad but true.
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Hello Daryl – if insurance companies reward docs for “lack of treatment”, then prescribing a pill for anxiety would still be considered treatment, right?
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In the US, what Daryl raises is true far too often. It is systemic and not primarily the fault of doctors. HMOs and insurance companies, In their different ways and as a matter of policy, do all they can to minimize treatment within the realm of deniability. The biggest push is to minimize face-to-face time, which is labor intensive. PCPs really are under tremendous pressure to rush through appointments and followup, so instant diagnosis and pill pushing are encouraged in the name of Efficiency.
For pain from a complex of conditions (and especially from a botched shoulder surgery) several HMO docs prescribed me opioids, as well as strong drugs that caused severe GI and other side effects, My resistance was yet another item of “noncompliance”. I had to campaign for 2 years for another shoulder surgery, which greatly reduced a major source of pain. The HMO provides very little and limited PT (immediately after severe injury or surgery) so I have to pay out of pocket for PT and body work for chronic conditions, though this work actually does reduce my pain and improve my function.
I thought about that this year when the New York Times ran a series on overuse of opioids. Buried in one article was the fact that insurance companies and workers compensation rules readily will provide pain meds, but allow very limited access to the PT and counseling that might help people reduce their pain.
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Hi Kathleen – that is nuts! Here in Canada, I not only do not pay out of pocket for regular follow-up with a pain specialist at our Regional Pain Clinic (which offers a comprehensive range of standard pain management services including nerve blocks, surgery, medications) but I can also sign up for free pain self-management classes there in things like Health Recovery Yoga, Health Recovery Tai-Chi, Health Recovery Meditation, etc etc.
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I am currently having trouble getting a referral to a cardiologist for a 2nd opinion as my doctor thinks I am “just anxious “.
After weeks of mild chest pain, I asked my doctor to be referred for an ECG. That ECG & stress test showed ECG changes suggestive of an MI, but CT angiogram and ultrasound show no blockages. Neither the cardiologist who did the tests nor my PCP can explain the results but say I’m OK. I would like a referral to someone who can explain why my ECG from 5 years ago was abnormal (and I wasn’t told) and why there are even more changes now if I’m OK.
Yes, I have arthritis and GERD – but they wouldn’t show as ECG changes – I think I have a right to be anxious. The pain in my left lower rib and shoulder blade doesn’t allay my anxiety either. (And yes, I am going to insist on a referral for a second opinion or change PCP)
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Katherine, you have a right to a second opinion based on your “ECG changes” to help solve the mystery of whether your symptoms are heart-related or not. Right now, you just don’t know one way or the other. Best of luck to you…
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The best decision I made was to change from a male doctor to a female. I recently had my first physical visit with her. I felt comfortable telling her I feared my anxiety diagnosis would hinder treatment in my lifetime. Sometimes it’s easier to be frank with a female. Anxiety doesn’t mean you don’t have a valid treatable condition, it just means sometimes they choose to assume it’s the underlying condition. Second opinion is okay, it’s your life. Doctors aren’t perfect. And you know your body the best.
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Good points about anxiety, Teresa. I have a female GP who is wonderful, and a male cardiologist and a pain specialist who are equally wonderful – I think it’s more about skill, respect and compatible personalities than about gender!
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Katherine, I hope you have a better relationship with your new PCP, and do persist. An abnormal ECG was the first sign of my own cardiac condition, and it too was followed by a clear angiogram, but it took many years before the right cardiologist read my echocardiagram (and reread previous ones) to diagnose apical hypertrophic cardiomyopathy. I had suggested it myself shortly after the clear angiogram, but nobody took it seriously at the time.
“Anxiety” has been removed from my chart since then, and I changed to a younger and much more empathetic PCP, and she demonstrates a great deal of respect for me and my judgment. In any case, since those changes quite a few serious conditions have been recognized and treated appropriately. Most definitely worth the fight, and not just for me. After an abnormal ECG, my sister was recently diagnosed with AHCM as well, but my diagnosis smoothed her path, as now it is an official part of family history.
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Good point, Kathleen, about ECGs being misread/misinterpreted. Some studies have found surprising discrepancies in doctors’ ability to correctly interpret these tests. For example:
“Twelve per cent of patients studied had a high-risk EKG abnormality that was NOT detected by physicians. Rates of missed EKG findings from hospital to hospital ranged from 5.6% to 15.1%.”
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And, rather like Katherine, I had had a flagged ECG 5 years earlier (prior to surgery) that was referred to my PCP. He dismissed it as “over read” because I had a very active swim routine, which, as a former competitive swimmer, he determined I NEVER could do if the EKG/ECG was accurate. I was entirely happy to believe it and never gave it another thought until I found the result over 5 years later, well after the second ECG brought me straight to the ER and an angiogram.
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My doctor has told me that it’s “nerves” and I should see a psychiatrist. She’s said this twice. I told her both times that that doesn’t help me at all. Thankfully w/Medicare (already have a disability) I can make an appt w/a cardiac specialist on my own. I’m just dealing with a lot of stress & stuff. Since I’m fatigued and have trouble with sleep, it is difficult to handle more than one thing at a time.
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Sounds like you have lots going on all at the same time, any of which can cause distressing symptoms that may or may not be heart-related at all. Fatigue and sleep problems wreak havoc on day-to-day function, for example. You’re so right – it’s so hard to handle more than one thing at a time, as I wrote about here.
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Enjoyed this article. I am a 51 year old nurse who in my lifetime has asked my dr to rx anti-anxiety meds to be used as needed for short term use due to divorce and parenting two children 24/7.
I knew I needed a little help and did not feel uncomfortable admitting it. Last year I experienced a rash followed by stiff neck (ortho said strain curve of neck reversed), cognitive impairment, and unilateral paresthesia of left side of face along with tachycardia, pulse 140 for over 4 hours. This was the day after I completed a 16 day cycle of prednisone, 60 x 3, 40 x 3, 20 x 10 (I experienced the facial paresthesia the day prior and initially on day 5 of prednisone)
Never had I had tachycardia. Drove myself to ER 15 miles away. Of course after ekg (borderline ekg: sinus tachycardia, consider flutter, AV heart block) and MRI, they wanted to give me xanax.
I declined the xanax. Told me sometimes people who are getting ready to have a nervous breakdown have these symptoms. Really? They’re telling this to a woman who openly made appt to see dr for stress in years prior. I didn’t need it and told them so.
Seen by cardiologist, two beta blockers later my pulse was 50 and I’m falling asleep driving. Months later, the tachycardia stopped, the facial paresthesia continues. Neurologist says disseminated varicella, based on blood work, no further imaging indicated. She discharged me even with ongoing paresthesia, said it would last a while. Paresthesia progressing to other side.
I decided to schedule an appt with ENT. He says no varicella, wants to send me to oral facial doctor who’s title is DMD. I think it was large amount of prednisone and the celebrex I was taking for osteoarthritis of shoulder in combination that screwed things up.
When referred to specialist, I disclose I have a history of anti-anxiety med use. But of course they already know, it’s in my record.
What if they excluded your history and took symptoms at face value? And I hate to say it but if I were a man, anxiety would not be a diagnosis. A man’s chart would not list anxiety. It would say usual life stressors. Woman who step up and ask for short term assistance are penalized .
A woman’s chart should say: “Smart woman, looking after herself so she can take care of family”.
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Hi Teresa – I just love that “smart woman” last line of yours! If only our health care providers viewed past treatments for mental health issues in as unbiased a fashion as for physical health issues!
And you are 100% correct in your statement that if you were a man, anxiety would NOT likely be your diagnosis (e.g. the 2005 Cornell study mentioned in my post demonstrated this bias quite clearly, as researchers wrote: “Men’s identical symptoms were perceived as cardiac whether or not emotional stressors were present.”)
A medical history is important when it helps to inform a current medical mystery – but NOT when it jeopardizes a physician’s ability to assess current symptoms without bias.
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In the end my facial sensations turned into pain. Saw the neurologist and she diagnosed me with trigeminal neuralgia and migraine. Trying a course of steroids, then maybe if need be preventive medications. She sat down and showed me the MRI pointing out things. I feel a sense of relief.
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Thanks so much for the update, Teresa! Although neither trigeminal neuralgia nor migraine are a walk in the park, it must feel like a huge relief to have clear diagnoses at last. Best of luck to you….
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My 36 year old daughter presented to the ER with complaints of chest pain and numbness and tingling in her hands. The doctor dismissed her concern that there was something wrong with her heart telling her it was a “pinched nerve”. He prescribed prednisone and vicodin and discharged her.
Ten days later my daughter died suddenly, the autopsy report showed that she had a 70% stenosis of the circumflex artery. My daughter had been complaining for years to any doctor she had ever had, and they all dismissed her concern. No one would listen, I am assuming that she was considered a hypochondriac with mental health issues as she had a diagnosis of bipolar disorder.
Young women do get heart disease and a misdiagnosis can be fatal.
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Oh Dee. I am so, so sorry to read of your daughter’s story. What a terrible loss for you and your family. Tragically, a patient with a mental health history is doubly at risk when cardiac issues strike for just the reason you cite here – symptoms are too often dismissed or lumped in with existing diagnoses on the chart. Thank you for this very important reminder to all young women and their family members.
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I have a history of a fairly severe psychiatric illness and unfortunately those diagnoses pretty much follow me everywhere. All a doctor has to do is glance at my list of medications.
I’ve been having some cardiac symptoms for a while including shortness of breath (which has been treated as asthma). My last x-ray and finally a CT scan showed a bilateral pleural effusion. I’m finally seeing a cardiologist (not from my regular medical group) tomorrow (May 4th). All the doctors I’ve seen so far have been treating my symptoms as due to anxiety, especially my psychiatrist (who I also see for therapy).
Anxiety doesn’t cause pleural effusions, but even with an MD after their name, they can’t seem to figure that out!
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You are correct. A pleural effusion is a buildup of fluid between the layers of tissue that line the lungs and the chest cavity. Last time I checked, anxiety isn’t the cause of that condition – it’s the understandable result of not being able to breathe properly. Best of luck to you tomorrow…
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I was labelled as an “anxious female” and was delighted when I got the diagnosis. It sounded much better than “menopausal” , which was the label I was stuck with during years. I went through cervical cancer and the removal of most of my thyroid during menopause and all my symptoms were declared as such.
So when a new doctor diagnosed me as “anxious female” I was actually happy, because I could do something about it (medication, change of lifestyle, exercise, yoga and meditation)…… except the feelings of having an egg beater in my chest, not being able to breathe while laying down and most of all that of having a hand grabbing me by the throat while squeezing really hard and another imaginary hand pressing down on my shoulder to the point of severe pain did not go away and during the last few years only got worse in frequency as well as level of discomfort.
Living in an underdeveloped country, but coming from Germany as someone without a family, living alone – according to my doctor – only contributed to what he diagnosed as “severe anxiety”. The diagnosis of “rampant Systemic Lupus” ( I have never been in remission) only, according to him, contributed to the anxiety.
On March 25th I took myself to the Emergency Department of a nearby hospital, because the squeezing of the hands around my neck and on my shoulder had become relentless to the point of almost fainting several times. I was having a heart attack, plus it was discovered that I had had a “silent” one in the very recent past…plus that I had had heart trouble for years.
Taking five different medications ; among those Coumadin and Isosorbide (I don’t know what the English name is) I now feel better than I have in the last 12 months.
Of course I am anxious, because of what is happening in a place where the word “cardiac rehabilitation ” is unknown and where no one is willing to explain the diagnosis of “Cardiopatia Isquémica” ( which I hope is translated correctly as : Ischemic Cardiomyopathy) .
All I was told is to take my meds and not eat leafy green vegetables. I walk as exercise on my own against the wishes of anyone who knows me and against the advice of my doctor (and no, changing doctors would not help, because the next one would not know any better). So, while I am still anxious about a lot of things I would like to insist that I am not an “anxious female”.
I apologize for such a long post, my first one to boot. I just recently found this website and reading all the contributions had provided me with a great deal of courage and hope.
Thank you all!
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Hello Droelma – glad you found us here at Heart Sisters. Both anxiety and menopause can be popular all-purpose misdiagnoses when doctors can’t explain our symptoms, as you’ve already learned. Also, I’m glad you’re feeling better now – best of luck to you in your ongoing recovery.
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I’ve already had one “anxious female” misdiagnosis and am trying to dodge round another one just now.
My first was when I presented to the out of hours GP service having had difficulty breathing all night. I have a history of asthma, chest infections and a previous pneumonia and was worried in case I had pneumonia again, but more than anything I just wanted to be able to breathe properly. Turned out I was hyperventilating (because my chest was so sore). GP dismissed me as having a panic attack, tried to give me diazepam, which I refused to take, I managed to calm my breathing down a bit and thought I’d better pull myself together so went out shopping with my husband. I struggled through the day and was still suffering the next day so went to my normal GP. I had pneumonia. I complained to the out of hours docs but their response said that I’d “admitted” to previous panic attacks (I hadn’t, because I’ve never had one yet), that the diagnosis at the time was perfectly fine, and that the pneumonia must have developed the next day.
Right now I’m in the middle of investigations for unexplained chest discomfort, shortness of breath on exertion and a host of other as yet unexplained symptoms. Thankfully so far it doesn’t look as though my symptoms are cardiac related, but I’m already feeling embarrassed, as if I’m making things up. The nurse yesterday said that I still looked worried when my exercise stress test was normal. I told her that yes I was, because I want to know what’s wrong! No amount of me telling her I really don’t want to have a heart condition seemed to convince her.
I’m wondering whether the panic attack misdiagnosis is still on my records?
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Alison, you bring up a disturbing point here: that natural inclination to feel disappointed when diagnostic results (e.g. your exercise stress test) are “normal”. This reaction is completely understandable when we need to find out out what is happening to us. No wonder we interpret such results as “good news/bad news”. (The good news: it’s not your heart; the bad news: it’s not your heart!) When such news is presented without an accurate alternative diagnosis to explain distressing symptoms, no wonder people can feel anxious. Best of luck to you in solving the mystery…
PS Yes, I’m betting that “panic attack” is still on your medical record unless you specifically ask that the misdiagnosis is corrected to read pneumonia.
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I found this today because my disbelief over another dumb blow off Dx given today. I’ve always had sharp pains, flutters, or weird thumps in my chest growing up. It’s always been blown off as gas, indigestion, stress, inflamed cartilage, etc. I’ve been even looked at by family members as a hypochondriac until they actually had some issues themselves.
I went to medical assisting school and started working at doctors offices to treat people with more compassion and care than I have been given. I am naturally high strung so working in a fast pace environment suited me. I was working fast one day and my heart went into a tachycardia so darn fast the nurse practitioner couldn’t count my pulse and looked at me amazed. I told her that these issues happen and you are the first to ever see it. She was concerned that I was blowing it off. That’s just what I was taught by negligence, really.
We did an EKG, but it was gone that fast and didn’t show up. I do get pains when I get upset but I get more when I’m at rest. My last EKG a few years ago did show some slight changes. Nothing major, just some things to keep an eye on.
TODAY THOUGH: I’ve had shooting pains on/off all day in “the wrong arm”, fluttery feelings in my chest, slight pressure mid chest and a head cold starting with ear pain. As a precaution, I finally listened to my mother and went to an urgent care associated with the local hospital. I didn’t want the ER for obvious reasons. This doctor looked at my vitals and history from all my visits to my OB/Gyn, ER visit or two, and told me
1) that hypertension was one of my DX listed (never had high blood pressure once!),
2) my head cold was being allergic to my eye make up (oh?).
She listened to my heart and said it was anxiety because she didn’t hear anything wrong. She actually told me very pointedly that she could not give me pills. I think she thought I was a pill popper trying to use arm pain for pain meds.
I was in comfy clothes instead of my professional clothing that I wear to my administrative position (been there 7 years). I don’t do drugs, I rarely drink. Yes, I smoke and even expressed my desire to quit by natural methods first. I believe in all things healthy and am very health conscious. I stopped being nice and told my son to get his stuff.
I’m at home now. I’m still feeling bad. I haven’t cried in years. I did today. Thoroughly disgusted with the lack of care and how someone will look at you fast and make an inaccurate assumption based on gender, clothing, and a different personality than themselves. I always did an EKG on a patient that had any type of symptoms or worries to be on the safe side. Most free of charge to be cautious with someone’s health. I would rather be proactive with someone’s health and heal then to judge and say someone is anxious because a diagnosis is needed to complete the visit in 15 minutes and I already paid my copay. They didn’t even get that EKG. Negligence in my book. She told me I was just like her sister. Um ok? Does she like her sister? I don’t think so. This is not anxiety, it’s anger, disgust, and hurt.
What if there is something wrong and I drop dead before my child. That’s why I was anxious in your office. I don’t want to blow off a what if I should get this checked out. Guess what was in my chart from the ER though from 20 years ago. I overdosed on my Xanax that an old quack doctor gave me to help me quit smoking before I knew better and matured. I messed up and I was young. So yes, both anxiety and Xanax played into me being dismissed today as an anxiety dx. Think I might be going to the ER if I still hurt in a bit.
I feel better venting. Thanks!
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“She was concerned that I was blowing it off. That’s just what I was taught by negligence, really.” I’ve never heard it expressed that way, and it’s spot on. I’m going to have to use the “I was taught by negligence” line the next time my docs wonder why I take everything they say with a grain of salt.
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My story is very similar to “Disgusted’s”. It took 18 years to be properly diagnosed with Crohns, 11 yrs for my MS diagnosis and 37 yrs for a genetic collagen disorder. Anxiety and depression diagnoses made it impossible for a doctor to take me seriously. With the collagen disorder I had developed POTS (postural orthostatic tachycardia) and SVT.
Recently, it felt like I was having a heart attack – intense pressure, vomiting, fatigue beyond my normal and profuse sweating. My doctor was not in that day (on a Friday) and I delayed going to seek help. I went the following Monday where the doctor listened to my concerns, and reviewed my records – never once examining me or listening to my heart. I had had a stress test about 14 months ago and that was okay so obviously it couldn’t be my heart.
Yes, I know I should have gone directly to the ER but am so tired of the anxiety diagnosis and it was my birthday. Just fed up with decades of being told its all in your head despite having real diagnoses.
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I had to live through 10 years of suffering before I found one doc who helped me. Then another 10 years to get an actual diagnosis (systemic lupus). It took another 9 years after that for a doc to take my symptoms seriously enough to treat my condition. And that was ONLY after I progressed to heart failure. Nice.
The funny thing? I feel way better now than I did in my 20’s. Life was really miserable then. I guess it was physical conditioning to prepare me for the future. About 30 or so docs over the years failed to diagnose me. The whole lifetime ordeal I’ve been through is disgusting and inexcusable.
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Inexcusable indeed. That’s a long time to suffer without appropriate diagnosis/treatment. Yours is a tragic story, so it’s quite fabulous that you now feel better than you have for decades!
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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.
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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.
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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.
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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.
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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.
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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! )
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“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.
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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”.
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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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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”! 😉
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I AM CONFRONTING THIS PRECISE ISSUE! I have been puzzled, disheartened, and now ALARMED by the way that I have been treated at one major medical clinic by a series of physicians and specialists since last February.
I was concerned when the first physician, not my primary physician, wrote: “She says…but after evaluation no evidence indicated.” Then, although she referred me to two specialists, each one was patronizing, dismissive, and belittling toward me. I had not ever been treated this way at this clinic before. They totally dismissed my statements.
The initial physician diagnosed “dry mouth,” although I had explained quite significant symptoms. Since then, my condition has radically deteriorated, although I have had two additional appointments with two other physicians. Each time, I am quickly dismissed, treated exactly as if I am “imagining” symptoms and exaggerating!
This morning, I called to make an appointment with the periodontal clinic and I was provided an appointment in four weeks! I explained that I had a fever, chills, was experiencing significant pain, and that I could not possibly wait four more weeks. The scheduler actually said, “Sorry!” When I asked, again, if any other periodontist was available, she said, “Sorry!”
I gave up, called the University Graduate Program in Periodontal Medicine and the scheduler was very concerned about me AND provided an appointment for the next day!
I am stunned at the horrific treatment I have received, and I KNOW that some notation was made on my file, discrediting me.
In the meantime, 7 months have passed, and the condition in my mouth is now extreme, gum tissue entirely missing from my entire lower jaw!
IF the periodontist at the University diagnoses anything except “dry mouth,” I am next scheduling an appointment with a personal injury attorney and filing a medical malpractice lawsuit!
I am increasingly horrified by the contemptuous attitudes toward women. Is such belittling increasing? OR, as I grow older, am I no longer a credible person?
I am STUNNED.
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A frightening story, Anna. So glad you got such a timely appointment at the University – good luck with the follow-up treatment there. Meanwhile, ask the clinic to provide copies of your medical records.
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I hope the university clinicians provide the help you need, Anna. And if they don’t, please go somewhere else.
Sometimes we really are fighting for our lives and anyone would become upset, agitated and, yes, anxious when reports of serious health issues are persistently discounted.
You really do have to get full copies of your medical records and review them carefully.
“Dry mouth” was an understated description of one of my symptoms too. Since this ‘Anxious Female’ was first posted in 2012, I received an official diagnosis of a condition that effectively prevented me from getting real sleep for years, as well as dental damage. It was a diagnosis I had proposed some years before. Dismissed, of course. “That would be rare.”
I already have to juggle several serious medical conditions, yet was forced to conduct what amounted to a military campaign to get appropriate treatment for a condition that was slowly killing me.
Now, with treatment, I am feeling and doing much better, but all those years in which docs dismissed my reports needlessly prolonged my chronic sleep deprivation. And that compounds my risk for diabetes, still more cardiac damage, Alzheimers and much more.
As an example of how cancer survivors are ill-served, I raised this fight and outcome with the head of radiation oncology at my HMO. He told me that he understood my frustration. “Sometimes it’s better just to find another doctor.”
I replied that the issue was their persistent failure to provide appropriate care, not my emotional state. It is a good idea to move on from a doc who is a bad fit, but in far too many circumstances that is easier said than done. Still have to take this to another level…
But don’t give up, Anna. There is a persistent bias against women in medicine, even more dangerous because it is usually unconscious. Your story is important, so I hope you find more places to tell it.
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PS Throughout all that, people told me I looked good. And now, ever since I actually get some sleep, these same people look at me quizzically as they tell me how great I look. Did I get my hair cut? I think but DON’T say, “No, it’s just that right now I don’t have to fight so hard to stay alive.”
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Such important points, Kathleen. “Just find another doctor” seems almost glib advice – as you correctly say, far easier said than done particularly for those living in small towns/rural areas. And that persistent bias against women in medicine is alive and well, as Mayo Clinic’s Dr. Mary O’Connor explained in this post.
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I had the misfortune of being labeled an alcoholic and having anxiety by an ED Doc even after the visit showed I had a small bowel obstruction, for which I was admitted and treated. Had the NG tube placed and everything. I caught the error myself while taking my medical records to a PCP which was out of network. The hospitalist who saw me continued the diagnosis of alcoholic and suffering from anxiety and never mentioned the small bowel obstruction.
Why do male doctors feel such a strong need to mislabel female patients, even when CT scans, etc show an actual, real medical problem? I am still battling the various HIM departments within the medical system to amend my medical record and state that I am not an alcoholic and never have been. It’s disheartening. Thank you everyone for your posts!
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A frightening example of how a label can stick, Tami. Best of luck to you in getting your records corrected.
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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.
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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
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“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.
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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.
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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!
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Judith….I had an a-fib attack while driving on a six lane highway with no shoulder, so I feel your pain. I kept feeling myself starting to pass out and kept pinching myself HARD to stay conscious. By the time I got to a place where I could pull over, I contemplated calling 911, but didn’t want to be embarrassed (can you believe it?) and was afraid to leave my car in a random parking lot. So I managed to get to the hospital myself. It was three days before I was getting my ICD implanted and I was going to the hospital anyway to get a routine pulmonary function test. My own cardiac electrophysiologist (male) said I was just nervous about getting my ICD. I said, “Doc, you’re dead wrong on that one, because I have the opposite problem. I’m told I’m not anxious ENOUGH.”
And it’s true, because all these years of being sick and getting no help, and now that I’m middle aged they’re going to get all worried about heart failure? Pul-EEZE…..WHATever. It was my cardiologist (female) who decided to admit me. And ok, I did try to escape.
Never leave a woman who won’t sit still with access to her shoes and her car keys. My husband caught me.
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Pam, I don’t even want to picture you driving on that highway in your condition! And your escape attempt made me laugh out loud! Thanks so much for sharing this.
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Pam, maybe we should start a women’s movement – Frantic Females Feeling “FINE”. or FINE Females Feeling Frantic (Can’t think of anymore “F” words that Carolyn won’t bleep out on this respected blog).
I refuse to believe that we women are “f_ _ _ed up”. The “out of touch with reality” genetic code is on one of the XX chromosomes but neither chromosome will fess up.
Glad you survived Mr Toad’s Wild Ride!
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Ha ha! So clever, you are, Judy-Judith…
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I think we should have t-shirts made that say, “Would you label your mother as an anxious female?” That might get some attention. Or maybe some of them would label their mother as an anxious female.
To top it all off, my lupus had caused me severe digestive system problems for years. I suffered a long time before a doc took me seriously. Now, my husband had a rare tumor removed in 2007, and spent most of that year in and out of hospitals, the result of which was he picked up c.difficile as a parting gift. (Google that….it’s disgusting.) Before we knew he had c.diff I took him to a local ER. They didn’t know what he had yet, but they admitted him anyway. Now, I don’t begrudge the guy getting help without much effort, but COME ON….how many years did I have to suffer and no one paid attention?
Then the icing on the cake was that they hadn’t gotten the cultures back yet, but started treating him for c.diff anyway, and he got better. A month later I got the c.diff…..probably from cleaning all the poopy laundry and toilets in the house….so after having a horrific incident all over my car reminiscent of the Golgothan S*** Demon from the movie “Dogma”, I cleaned myself up as best I could, took one of my husband’s flagyl (which is the first thing they try when you get this nasty thing) so I could get out the door without leaving a brown trail wherever I went and drove to the local ER.
I told them my story, and begged for my own prescription of flagyl. They said, “Oh, we can’t give you that until the tests come back.” Are you freakin’ kidding me? I’m going to use every bathroom in this hospital and share my c.diff with ALL OF YOU. You want to write me a script for flagyl or call the hazmat team to sterilize everything in this joint?
I walked out of there with my flagyl.
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What? WHAAAAT?!?!? Your hubby gets meds for c.diff without getting the labs back yet, but one short month later, YOU (clearly at high risk because of all that poopy laundry) have to WAIT for your labs before being treated?!?! I have to go have a wee lie-down after that story, Pam… PS Oh yeah, I’m also guessing that hubby didn’t have to make even a tiny fuss in the ER before getting his flagyl….
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Pam, If it weren’t so serious what you wrote could be a script for a situation comedy on TV. – you have a knack for creating “images” in words (which I am now, thank you, having trouble getting out of my mind)!
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Pam, couldn’t find a better illustration that that! Which inspires me to share a much much lesser anecdote:
As the kick-off story of this post, I eventually succeeded in getting ‘Anxiety’ removed from my list of ongoing conditions and my medical care has greatly improved. In 2 years, one serious condition after another has been officially diagnosed, treated – though I had correctly diagnosed myself years earlier and been dismissed.
My darling husband actually does suffer from anxiety – panic attacks and the whole bit, but nowhere is that in his medical record. He asked his doctor not to enter it until they have investigated every single thread of physical cause and he obliged. They are slowly working down the threads.
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Aaarrrrrggh. The irony….
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Dear Kathleen, I hope you will be able to read my reply, though so much time went away…
I am so struck with your story, it leaves me without words basically. I am under the threat to have such “diagnosis” in my records too. As I assume, I will not have it if I stop asking questions to my doctors and stay alone with my symptoms until the next heart attack.
But I wanted to ask you: how did you manage to remove this “anxiety” nonsense from your medical history? Did you go to your physician and just ask?
Anyway, thank you for the sharing your story — at least, it is obvious now that I am not the only woman in the world dealing with this medical nightmare.
Have a wonderful day,
With all the best,
MioMyo
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Thank you for the very much needed laugh. I managed this comeback once, but not nearly with such eloquence and, humor – if only black humor. I have a cartoon image to go along with your statement.
“Doctor, I absolutely was hysterical when I arrived. But I assure you I have a depressive disorder, not an anxiety disorder.”
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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
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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
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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.
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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 . .
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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
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Amazing. 911 operators can apparently diagnose anxiety attacks even over the phone. Lovely hearing from you again, Beamie!
C.
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In fairness, I do think some men get labelled by their doctors, too.
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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.
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Try labeling them (the doctors) on Angie’s list
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Or sites like RateMDs…
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Carolyn’s note: This comment has been removed for its unnecessarily nasty response to another reader.
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