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.
“ 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
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).