A guest post written by Patti Digh, social activist, heart attack survivor, and the author of eight books including her best seller Life is a Verb: 37 Days To Wake Up, Be Mindful, And Live Intentionally. This essay originally ran on her blog 37 Days in January 2016.
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“ He’s working with a med student shadowing him today. Do you mind being seen by her first?”
In the spirit of education, I said, “No, of course not.”
She had long strawberry blond hair and big glasses. We talked. “What brought you here today?” she asked.
“Well, I was seen in the ER three weeks ago for a blood clot in my leg and they told me I needed to follow up.” I watched her write down “Deep Vein Thrombosis.”
“ It wasn’t a deep vein thrombosis, but they did find a blood clot, and told me to follow up with you.”
She marked out “Deep Vein Thrombosis” and led me through my recent history since the Bad Fall Onto My Head on November 1st: concussion, double vision, vertigo, blood clot, and now this follow up, which also added recent chest pains to the list.
“Yes, a tight band of severe pain across my chest on the least exertion – going to get a cup a tea can cause it. Feels like your lungs feel in extreme cold when you have bronchitis and you take a deep breath. Significant pain and then I have to lie down for it to resolve.”
The doctor came in after a bit and explained things more thoroughly with this new audience, teaching while not listening, rather than just not listening.
We talked for a while. And then the bottom line, as the doctor talked to the med student.
“What we really are dealing with here is anxiety. Because it is anxiety that would take her to the ER on a Saturday with what might be a blood clot. Most people would wait until Monday and call here to get an appointment, but she went to the ER. This is just anxiety we need to be treating.”
“HELLO? I AM SITTING RIGHT HERE,” I thought to myself.
“AND HELLO? THEY ACTUALLY FOUND A BLOOD CLOT IN MY LEG, SO THERE!” I thought to myself.
And then, I couldn’t help myself. I said both those things out loud.
That’s Part one of this story.
Part two happened two days later, which happened to be last Saturday.
It happened in the big snowstorm of ’16, being picked up by firemen and transported over snow and ice to an ambulance that couldn’t get to our house in the snow.
And then into an ER, elevated troponin levels, T-wave inversions on my EKG, suddenly things started happening very quickly, and an overnight stay, then a transfer to a larger hospital, then a heart catheterization that was almost turned into bypass surgery because of the 90% blockage in a main artery, then an unfortunate big bleed that has left me flat on my back for the past 38 hours.
Yeah, that sounds just like anxiety.
And the sad fact is that I waited.
I waited because I felt shamed into feeling like an hysterical female, shamed into feeling like I was just anxious. JUST anxious. Like anxiety itself is something that isn’t real when we know that it is. Like anxiety is something to be ashamed of or embarrassed by. When our lives, bodies, souls, are in distress, anxiety is a likely outcome. Wear it proudly. It might save your life one day, and it can be treated, too.
He is not the first doctor to do this, and it is not always men, either.
When I had double vision after my Bad Fall, the female ER doctor lined my chart with “Anxiety” “anxiety” “Anxiety.” As if seeing double was a figment of my imagination because I might have been anxious about seeing double.
“DOUBLE VISION, DOUBLE VISION, DOUBLE VISION!” I screamed inside my head.
I think there are many things you could call me. You could call me stubborn. You could call me opinionated. You could call me outspoken. You could even call me anxious – when I am anxious – just don’t let that be the benchmark for my healthcare, or a Bingo call number, or a convenient thing to write when you can’t find anything else wrong, or are so intent on not listening to me that you can’t hear me.
So, Little Miss Anxious went to the ER in the snowstorm after pain so bad it made me throw up at home in the shower. Heart attack, stent, and now a complication from the procedure. Anxious, anxious, anxious?
No. Heart attack, stent, complication.
Want to be my doctor?
Listen to me. No, really. Put down the stylus to that irritating little beeping machine you have attached to yourself, and look at me. Listen like I am giving you the secret to the meaning of life, because I am. Mine. And you’ll have to hope someone listens to you so you can get to the meaning of your life someday soon.
Respect me. And respect me even when I’m overweight and eat too much sugar. Even then, I am fully human and deserve the best healthcare you can give. Even when you tell me every single time I see you that I just need to sweat more and that yoga isn’t sweating. I beg your pardon, and here’s a free coupon to a yoga class, dude. Sweat on.
Drop the almighty thing you’ve got going on. Be fully human. Say “I don’t know” when you don’t, in fact, know. Let’s make this a partnership.
How to save your own life:
Value your life enough to make hard, and what could be unpopular decisions. I was leaving the next day to teach a writing retreat on Tybee Island. I knew I had to get this checked out, hysterical female messaging be damned. That decision saved my life. The retreat would have to wait.
Fire doctors who shame you in any way, shape, or form. Will I ever see that doctor again? No, I will not. Though I will write and tell him why.
Listen to your own body. We live disconnected from our bodies, and we must stop that. We are disembodied, clever heads walking around on bodies we don’t understand, know, or pay attention to. This will kill us. Start tracking what your body is telling you. Daily. Know when changes occur. Pretend this is your 8th grade Science Fair project and you desperately want an “A” because by god, Jackie Ervin is NOT going to beat you at the Science Fair again this year.
Listen to this story:
A woman had yet one more hard year, after three very hard years. She didn’t sleep for months because of her autistic child becoming manic. Then, in November, she stumbled on an uneven stair, and hit her head very sharply. She lived with headaches, and developed double vision. She had her head scanned three times for different things, she had ultrasounds and CT scans with dye, she had an MRA to see if enough blood was going to her head, she developed debilitating vertigo, she developed a blood clot – all in two months – thought “ENOUGH IS ENOUGH” and her doctor even said, “This is all evidence of just anxiety.” And she thought, “Well, maybe this IS all the result of anxiety.”
And then she had chest pains, a heart attack, a stent, and another chance. Because she wasn’t just an hysterical female, and this wasn’t just anxiety.
Listen to your body. Ignore everyone else.
Please know the heart attack symptoms in women.
And yes, my patient number ends with “37.”
EDITED to include this note: We, none of us, are infallible. Not this doctor, not me, none of us. This is not an indictment of any one person as much as it is a warning and a “please note” and a “you’re in charge of your own body, life, healthcare, happiness” and a “keep seeking answers” post. I am not adding this addendum for legal reasons, but because it is important. Doctors are humans. All humans make mistakes, even those in uniform. And I wrote this story in part because this event was, in fact, part of a too-long pattern of not being listened to by this particular health care provider, and part of a too-long pattern of not being my most effective advocate for myself.
© 2016 Patti Digh – 37 Days
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Q: Have you ever, like Patti Digh, been shamed into feeling like you were “just anxious” during a health crisis?
NOTE FROM CAROLYN: I wrote much more about this important topic in my book “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press). You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
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See also:
When your doctor mislabels you as an “anxious female”
Finally. An official scientific statement on heart attacks in women.
When you fear being labelled a “difficult” patient
“It’s not your heart. It’s just _____” (insert misdiagnosis)
How gender bias threatens women’s health
Cardiac gender bias: we need less TALK and more WALK
‘Gaslighting’ – or, why women are just too darned emotional during their heart attacks
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Heart Sisters 
I can totally relate to this story. I have been chasing answers to my health problems for 50 years and am still looking for specialists that will actually do some relevant tests.
Living in a rural area with basic medical equipment doesn’t help either. I live with constant syncope, seizures, spasms, temporary paralysis and more. I have endured both physical and mental assaults on a regular basis.I was seconds away from taking the pocket full of pills I took with me one cold and rainy night and am feeling the same way again.
My husband has terminal cancer and has only months to live. My sons both live a long way from me and I can’t tell them how I feel. I can feel a trickle running down my cheek. Thanks medical profession for nothing.
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I am 61 yrs old. I am under relentless stress daily. I am the 24/7 caregiver for my mom, who is 95, has dementia and cannot walk anymore. My income is $10.00 a day. That is what our financial manager (my older sister) has determined I can get by with.
My therapist says I’m living on fight or flight Adrenalin all day long. Anyway since last fall, I have had no appetite, when I do eat I feel full after a few bites and don’t feel well for an hour or so. Sometimes it all calms down after I have bouts of diarrhea but I also have IBS so this may mean nothing.
I have lost between 10-20 lbs since then without trying. I am dizzy and light-headed whenever I am standing – this started in earnest in February, though I have fought dizziness all fall. Yesterday at church while I was leading worship, I fought off waves of lightheadedness and dizziness the whole time I was up in front. At one point I started feeling clammy and sweaty and I started having trouble breathing and could not continue singing until I sat down. I had no chest pain but I couldn’t get air.
I have not gone to see a Dr because whenever I do all I hear is, “Well, you’re under stress and you suffer from Depression – this is probably related to that and you’re already taking Antidepressants so there’s really nothing else we can do. Have you tried going for a walk?”
You know they could be right – maybe I was experiencing a panic attack – but I’m also a 61 yr old woman, who is overweight, sedentary (I cannot leave my mother unattended for even 5 minutes let alone 30 to walk), and who has been a caregiver for my mom for over 6 years.
Sometimes I am ambivalent about dying but I don’t want to die because I was stupid. Also, while no one in my family has had heart disease, my mom was born with congenital tachycardia and now she has arrhythmia. My father died of complications from a massive stroke 13 years ago and my daughter then only 27 years old, had an ischemic stroke that was devastating, four years ago. She has recovered 95% of her skills but her life has certainly changed. All of these things make me wonder what’s going on with me and if I should be worried about this though if people think I’m a hypochondriac who deals with mental illness and anxiety, how can I get to the bottom of this. It’s worrying.
Thank you for listening. I probably do sound like a freak.
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Hello Christina – I do not think you are a “freak”, but I do think you are suffering from really distressing symptoms and a truly overwhelming experience as your mother’s 24/7 caregiver. The one good piece of news is that you are seeing a therapist. It seems like that’s one of the few things you are doing for yourself, and not for others.
I urge you to follow the advice of Patti (the woman in this article) – specifically her three key messages in “How To Save Your Own Life” near the end of the post. Please talk to your therapist about these three steps, and about how to help you come up with a plan of your own to help yourself (like seeking medical attention when you feel sick). And I did want to mention the examples you list under family history of cardiovascular disease: because of their older ages, none of these will tell you anything about “what’s going on” with you.
I wish there were a magic wand I could wave to make all of these issues go away, but the reality is that until you decide that YOU are worth taking care of too, you are not likely to change your overwhelming experience of feeling sick and stressed.
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Two and a half weeks ago I went to bed, and as soon as my head hit the pillow I started having palpitations…the ones that hurt a bit because it feels it’s doing it so hard. I couldn’t go to sleep. I wanted to go to the ER the next day as I still had them and felt so badly. My husband didn’t want to take me. 😕 If it were him, we would’ve been in the ER the night before! Oh, wait, I did take him to the ER in the middle of the night before…had a heart cath and he was just fine. 😠 But, hey, I said, if I still feel bad tomorrow, I’ll go. The next day, he slept all day, woke once at 2 pm and asked me if I wanted to go. I was angry and said no. He went back to sleep and slept ALL day, never asking me how I felt. 😢
Monday morning I went to my pcp. He heard the irregular heartbeat and put me on a monitor for 24 hrs. I went back the next day and the results were frequent pvc’s… abnormal. He told me they would make me an appointment with a cardiologist. I saw my pcp write ‘anxiety’ down for a medical code. We never discussed it! I’d only seen him twice before. Once was for a brown recluse bite and the second was for toenail fungus. How he came up with a diagnosis of anxiety, I don’t know. So, I had to wait over a week to get into the cardiologist. In the meantime, my symptoms worsened. I developed shortness of breath… I’m always taking deep breaths…or trying. Half the time I can’t. If I walk to the kitchen and back, I start feeling horrible. I can’t even take a nap for all the pvc’s. I’m lightheaded and am extremely fatigued. I had my appointment and I like the guy. To make a long story short, he took some blood and no electrolyte or thyroid problem. He was surprised my pcp didn’t take any blood tests. So, I’m scheduled for an echocardiogram and heart cath on Friday. The dr gave me nitroglycerin and I ended up having to take it this past Friday night and every day since. The chest pain isn’t severe but the nitro relieves it for a bit. On Sunday, after 2 weeks like this, unable to do much of anything, my husband is finally taking this seriously and waits on me hand and foot with a smile on his face. Something is wrong with my heart. I don’t know what, but anxiety doesn’t last this long. Yeah, I’ve had a palpitation every once in a while, but nothing like the symptoms I’ve been having for 2 1/2 weeks. I can’t wait for Friday to get here.
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Hello Joy – I’m not a physician so cannot comment on your symptoms (which may or may not be cardiac-related – I hope you’ll find out more on Friday). But it may help to reassure you in the meantime that generally, PVCs are usually benign. For more info on this, read this about palpitations. Honestly, I’m more concerned about any person who refuses to seek care during what seems like a medical emergency because she’s angry at her husband. That doesn’t make much sense, does it?
Good luck on Friday…
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Hello!!! I found this site while googling for some information on some issues I’ve been having. Last Wednesday I woke up with radiating pain down my arm and feeling like my chest was in a tightening vise, my heartbeat felt wonky and like out of sync. Woke hubby up and to the ER we went. I’m 46, in fairly decent heath (or so I thought). Got through triage and assigned to an ER room. About 10 minutes go by…pain in arm still there, tightness coming and going, hubby arrives after giving them insurance and other info. Nurse was in but that was it. A few minutes later this young cocky ER doc arrived. Without even looking at me, he says my vitals look good and he’s fairly sure it’s anxiety. Shot me a look when I said no I KNOW it’s not anxiety. Finally got an EKG (of course no tightness at that time), bloodwork and chest xray. Sat there for almost 5 hours!!! Blood pressure and pulse were through the roof, I could feel my heart beating out of sync. Hubby went to see what was going on and the nurse came back in disgusted and asked what was wrong. Said I was still getting the pain/pressure so she went to talk to the doc who ordered another EKG. 20 minutes later they came in to do that and more blood work. Didn’t hear anything for another hour when the nurse came in with discharge papers and started unhooking everything. I was like whats going on and she said you are being discharged, there is nothing wrong. I said I wanted to talk with the doctor and 10 minutes later he sauntered in and said one of my EKG’s was normal…didn’t answer when I asked about the other one and patted me on the head and said “I told you it was anxiety” I said and I told you it’s NOT! He walked out of the room. I looked at the discharge papers and they said to follow up with my doctor in a week and go for a stress test. I go to my doctor tomorrow. I’m still getting the pain, irregular heartbeat detector is going crazy when I take my blood pressure on our home unit. On the way home from the hospital I said to hubby if I die tonight make sure you sue the hell out of the hospital. I’m not sure if I’m more scared of them finding something tomorrow or of them not finding anything. My husband was at the same ER months ago with heart issues and he said they didn’t leave him alone and within an hour of him being there he was transported to a bigger heart hospital, with them saying better safe then sorry. Double standard much
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Jean, I’m not a physician so cannot comment on your symptoms which may or may not be heart-related – you just don’t know at this point. But your comment about your hubby’s treatment at the same hospital is compelling. The difference between how ER docs treat male patient presenting with symptoms and how they treat female counterparts is well-known. We know for example that docs are more likely to apply existing treatment guidelines to men (even when men have “normal” diagnostic test results) than to women. The fact that you’re writing this clearly shows you didn’t die that night. I hope you have seen your physician already and have some type of plan in place by now to figure out what is causing your symptoms.
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Thank you so much for this, I just found it. I have always tried to be fair to docs, saying “it’s called practicing medicine after all”, but sometimes they do take it too far & they don’t listen.
I wonder, can you tell me, is irascible anger a symptom of heart attacks?
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Hello Catherine. Re irascible anger (i.e. becoming angry very easily) being a symptom of heart attack: I’m not a physician, but my guess would be that it’s not so much a symptom as a contributing factor.
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I thought of that as well, thank you.
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I’m 29. Two weeks after starting a new birth control I started developing chest pain and pain in my upper right section, as well as increased difficulty breathing. It finally got bad enough that I followed up with my doctor. She barely took the time to sit down and hear my symptoms before telling me it was heartburn, and letting me know she’d be sending a prescription to Prilosec to my pharmacy.
Two days later I blacked out in my kitchen – thankfully one of the rare times when my husband was home (he is on his last semester of college as well as interning for an engineering firm), and hauled me to the ER despite my protestations that the doctor said this was just heartburn and I needed a Prilosec pill.
Turns out that heartburn was actually a pulmonary embolism, and the doctor said had I waited so much as another few hours it likely would have moved to my heart and I would no longer be around to watch my 2 year old grow up.
After 4 days in the hospital and months of misery on blood thinners, my doctor still refuses to acknowledge she did anything wrong because PEs are “just such a rare occurrence” and is very upset that I refuse to come back to her office. I just thank heaven every day that my husband happened to be home, because I know I would not have gone in had I been home alone. That thought still haunts me almost daily.
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Whoah! What a story. Two important lessons jumped out at me here: LISTEN to your hubby (or friend or sister or anybody who happens to be with you during a medical emergency!) and GO ALONG with their suggestion to seek immediate help. Far too many people, especially women, tend to dismiss or minimize their own symptoms. Your (former) doctor was partially correct: PEs are apparently “a rare occurrence” – most birth control pills now have a far lower dose of estrogen, so the risk of clots is significantly reduced. (I read recently that pregnancy actually causes more PEs than birth control meds do). But I hope you have found a new GP who listens to you and takes your symptoms seriously. There are many wonderful docs out there who do.
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Thank you for your story- I get episodes of intermittent chest pressure, always at rest, usually when I’m watching TV relaxing. I had gone to the Cardiologist for this – the same cardio that my brother went to. We had been going for yearly checkups because my Dad has LVH and has a Pacemaker and Defibrillator. My brother unfortunately died suddenly from Microvascular Cardiac Disease at age 55.
I was instructed by the Medical Examiner to follow up with Cardiology. My brother never complained of chest pressure. When I went to the Cardiologist he said “What are you doing here?”, I told him I was instructed to follow up as per the Medical Examiner. The Cardiologist rolled his eyes and said “Oh the ME’s are always doing this”.…Really? , he then proceeded to tell me I just have anxiety. ( My BP which was normally 110/60 had climbed to 140’s/90) I also told him how I was having trouble losing weight despite going to the gym. I work out 3-4 times a week and I was 10 lbs overweight.He then proceeded to tell me that I eat too many processed foods- when I tried to tell him what I eat he brushed me off. I was infuriated- told him I didn’t want to drop dead at age 55.
I have since changed doctors- so tired of doctors labeling patients with Anxiety when they don’t know what’s wrong….Always get a second opinion. I wonder how many Drs cost people their lives because of Doctor Shaming.
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So sorry for the delay in responding to your comment, Lori. I’m glad you changed doctors, but not for the reason you might think.
Right now, you have no idea if your symptoms are heart-related or not. Family history is just one of many, many cardiac risk factors. Many people (like me) have significant heart disease despite absolutely zero family history, and many others live long and healthy lives even with several family members diagnosed with (early) heart disease. Remember that a family history is only relevant if you have a mother or sister who had a cardiac event under the age of 65, or a father or brother under the age of 55 – and as I said, even then, a family history is just one of many other risk factors. By the way, really interesting research lately suggests we don’t lose weight by exercising, despite the common belief that we do. “We lose weight in the kitchen, and get fit in the gym”. Your only job now is to try to address all other risk factors – check this list for some suggestions. Best of luck to you….
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Thank goodness Carolyn survived her heart attack because look what the world has gained not long after that: Heart Sisters blog, Mayo training and a journalist with an enthusiastic, engaging ‘voice’.
I’m eagerly anticipating whatever is coming next…..oh yes, very eagerly! Because it is going to be exactly what we need out here. I just know it! Because that is what Carolyn does! Really well, don’t you think? (There, I said it out loud without jinxing anything.)
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Oh, Jaynie! Way to lay on the pressure, right? 😉 Thanks so much for the sweet message…
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I’ve been thinking a lot about this issue of doctors essentially diagnosing patients without examining them or listening to them–women in particular– and diagnosing them with something they consider to be insignificant– anxiety.
I too have had similar experiences, but am fortunate now to have good doctors who actually respect and listen to me. Something that I’ve noticed is that the doctors who are respectful and good listeners are humble individuals. I think the problem stems from an arrogance that many doctors seem to cultivate… I don’t know if it is a self-protective stance they use to avoid getting emotionally involved. Some doctors seem to believe they are God’s gift to the world. Others have not lived long enough to be shown up as wrong and have not suffered as a result of their mistakes. But I do think the root of much of this is a lack of humility and an over-abundance of arrogance.
I would really like to see medical schools incorporate true listening to the patient and advocacy of the patient-physician partnership in health as a key part of the curriculum. The physicians who do not truly listen to their patients are ignoring a key informational resource. I saw my family doctor yesterday and we got into a really interesting discussion about servant leadership and he was admiring people he had met who had that stance in working with the poor. It was so gratifying. After some of the pompous doctors I’ve seen, I feel so grateful for this one.
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Thanks for sharing your perspective. Your family doc does indeed sound like a wonderful person…
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Every word is so familiar to women and the medical world. It can take a long time to finally be heard. Personally, I was diagnosed with everything but what it actually was for over 20 years. I actually argued with my cardiologist to get appropriate testing while holding the autopsy report of my father which showed I was at risk for heart disease. Six months after appropriate testing and getting my heart disease diagnosis, I had a heart attack and surgery at 47 years old. I am now 69 years old.
What my father suffered for two weeks and died, I suffered over 20 years and did not die. I have had the gift of an extra 22 years of life which I came so close to losing. Now, I educate and support others.
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Suffering for over TWENTY YEARS while waiting for a correct diagnosis is tragic, Sharen. You have such a unique perspective now, which I know informs and enhances the support you’re now able to offer to other women!
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I can so relate to this. Thankfully, I haven’t had a heart attack, but I had other heart issues. They love to blame things on anxiety. If you’re overweight, they blame all your health problems on that. If you’re 35 and super healthy looking, they ignore all sorts of things: high blood pressure, high heart rate for years, fevers, all ignored because I look good. Frustrating.
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So true. And it’s not only anxiety that’s a great all-purpose misdiagnosis. I’ve had readers who, because of lifelong histories of asthma, for example, have also had their cardiac symptoms dismissed as “just asthma”. As I’ve often said, there are few things in life more anxiety-provoking than being in the middle of a frickety-frackin’ heart attack!
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I really am thankful that I ran across Heart Sisters in my search for answers. 2016 started with me all of a sudden having extremely high blood pressure, chest pain, and stomach pain. Been hospitalized with bradycardia and abnormal EKGs, but still no answers. Blood pressure is doing all right now, but I am still suffering with stomach pain that sometimes wakes me up out of my sleep because I am nauseated. In the midst of all this, I just outright fainted in the store one day and I too have been told I am anxious and dehydrated. This is a frustrating journey. I know my body, and I know something isn’t right, but what?
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Hi Janice – as you know, so much of medicine is just trying to figure out what the problem is NOT. Hitting upon the correct diagnosis is often a painful and frustrating process of elimination. Right now, you just don’t know whether your symptoms are heart-related or not, but SOMETHING is causing them and you need to find out what. Stomach pain and nausea that wakes you out of a sound sleep, for example, needs to be diagnosed and treated appropriately. Ask your physician what his/her treatment plan is for these and other symptoms. Best of luck to you…
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