Medical Sexism - being heard while female

My heart attack was in March of 2009. Seven months later, in October 2009, I jumped into women's heart disease advocacy via attending the WomenHeart Science & Leadership Symposium at Mayo Clinic in Rochester, which is a five-day intensive training program for women with heart disease--they take around 60 women each year (all of whom have some form of heart disease), out of a large number who apply.

With the training we receive at the Symposium, we turn our passion and our personal experiences of heart disease into real-world skills in advocating, educating, and supporting women with or at risk of developing heart disease. We leave the Symposium as patient-experts, equipped to become community leaders in women's heart disease awareness.

Since mid-2009, I have staffed information booths at health fairs, attended events in people's homes, in churches, in country clubs; I've run a support network, I support women with heart disease online, I write a blog. While I'm not an old hand, I'd say I'm fairly comfortable with my women's heart disease advocacy--how to do it and what my own particular strengths are.

However, I'm a babe in the woods when it comes to the broader patient advocacy movement, as I wasn't aware, until around six weeks or so ago, that an organization like the Society for Participatory Medicine existed. Chalk it up to an intense focus on my particular issue, if you will. But the fact is, I have only very recently discovered this broader movement to foster engaged, educated patients who are true partners in our own healthcare.

For years now, the folks in this movement have been urging healthcare professionals to listen to patients, to see us as a valuable resource. Or as my new friend e-Patient Dave says, "Let Patients Help."

I want to be an active, engaged, educated, empowered patient. I have educated myself, I am active in my care, I speak up about my needs. I'd give myself a solid "B" on my ability to be an e-patient. Doing pretty well, still room for improvement.

Imagine my dismay upon hearing that one thing I can't change -- my gender -- is held against me:

'Medical Sexism': Women's heart disease symptoms often dismissed

From the article: "Cardiologist Dr. Adam Splaver says a symptom like shortness of breath is too often dismissed as anxiety among women.

'In training, we were taught to be on the lookout for hysterical females who come to the emergency room,' said Splaver."

I am thankful, in this season of giving thanks, that the emergency room staff took my classic heart attack symptoms--chest pain that radiated down my left arm and up into my neck and jaw, nausea, and cold sweats--seriously and treated me appropriately, even as they told me that I was too young and too female to be having a heart attack.

And even as they wrote in my chart, but didn't say out loud to me, that it was possible that I was just suffering from "anxiety," they did an EKG, drew blood, did a chest X-ray, and gave me a nitro patch and an aspirin.

As they talked about esophageal spasms or acid reflux, they admitted me overnight for observation, just in case. When the second round of bloodwork showed up with elevated troponins, a stunned-looking doctor came into my room to give me the news that I'd had a heart attack. In the back of my mind, I was not surprised. I wouldn't have insisted that my husband drive us to the ER if I was just feeling a little "anxious" (yes, I've had a panic attack before, no, this was something entirely different).

I am reminded of my fun with chicken pox--not shingles--as an adult, around 12 years ago. Growing up, neither I nor my siblings had ever had chicken pox. When I worked in a hospital in the mid-1990s, one of our interns from overseas got it and as a result, all of us in the office who thought we'd never had it had to troop over to the hospital's Infectious Diseases clinic and give up a couple tubes of blood to be tested. My sample was the only one that came back marked "No varicella antibodies." Further proof that I hadn't even had a sub-clinical case as a baby.

Fast-forward to late 1999, after Thanksgiving. A small, strange bump appeared on my chest. After a couple more appeared on my torso, I wondered if it could be chicken pox. I showed my female boss, who'd raised two children. She thought they looked suspiciously like early-stage pox, so I went to my family doctor. They said "impetigo" and sent me on my way, all of my protestations that by the way, I've never had chicken pox seemingly going in one ear and out the other.

As more and more appeared, my certainty that it was chicken pox, and NOT impetigo, grew. I went back to the doctor. This time, they finally listened. They put me on Famvir, which did no good but might have if they'd prescribed it when I first showed up--and told my husband to watch for possible signs of pneumonia or meningitis, had me coming in to the clinic almost daily so they could check me themselves, and even once pulled in a med student working there, to look at me, as mine was a "very involved case" (IOW, I was a medical curiosity for the first, but not last, time in my life).

They never once apologized for not listening to me. Sometimes I have those "going back in time" fantasies. In this particular one, I would grab my physician by the lapels and ask him to look me in the eyes as I said slowly and clearly, "I HAVE NO VARICELLA ANTIBODIES."

I am reminded that the "P" in SPM stands for "Participatory." To me, that means a give-and-take, a conversation, where both parties listen to each other.

I'm talking, but who's listening?

HIPAA, Heart Disease and TMI

Yesterday, I and another heart disease advocate worked all day at at table for WomenHeart, handing out information on women's heart health. My friend and I are both heart disease survivors.

At one point, a woman came up to our table and started telling me her story of postpartum cardiomyopathy. I said to her, "You really need to talk with _______," my fellow patient here; she's had post-partum cardiomyopathy, too."

My friend wrapped up the conversation she was having with another visitor, and I put the two of them together. I stood back and watched while they traded stories, exchanged contact information, and made a real connection with each other, since they had a shared diagnosis.

As our newest heart-sister walked away after hugging my friend, she said how great it was to be able to talk to someone else who'd been through the same thing.

Did I break a HIPAA rule by telling this new lady about my friend's diagnosis?

I don't know, but what happened yesterday wasn't unusual, at least in the patient communities that I participate in.

As longtime readers know, my own diagnosis is idiopathic SCAD (spontaneous coronary artery dissection), my right coronary artery repaired with six overlapping drug-eluting stents (DES). If you're curious, I can even tell you the make and model of these tiny bits of metal in my body -- Xience V, by Abbott Labs.

No one knows what causes SCADs, and there's no standard treatment. Some people who have dissections have a connective tissue disorder, some women are pregnant or have just given birth, and others, like me, just have them for no reason that we know of--that's the idiopathic category. As for treatment: some people get stents, some have bypass surgery, some are medically managed, and some get no fix (aka, the "watchful waiting" strategy).

When a new person shows up on the heart disease message board, sometimes one of us will say, "Oh, so-and-so has the same thing," same diagnosis, same treatment, same experience with side effects, whatever.

And we don't think anything of it; what we're doing, in our eyes, is accurately connecting patients with other patients who have something in common. Especially when we know that the one we're referring to may not check the message board very frequently anymore, we'll send an email: "So-and-so is new, has diagnosis/treatment X, and I know she'd like to hear from someone else in the same situation."

At Mayo's Social Media Summit a couple of weeks ago, there was a lot of discussion around HIPAA, patient disclosure, privacy, and keeping control of privileged health information. Which has me wondering, have we been inadvertently violating the law all this time and didn't realize it?

If so, how can we continue to support each other, while staying on the right side of HIPAA? Is HIPAA even concerned with patient-to-patient sharing, like we've been doing?

I honestly don't know. I'm freely admitting my ignorance on the subject and would love to hear various perspectives on the subject.

SCAD Ladies Stand Up: Stories of Patient Empowerment

My partner in crime, the other half of our "Dissection Duo," aka my friend Katherine--she and I, and Dr. Hayes (the courageous cardiologist who agreed to take us on as a group and study us--at 100% Katherine's instigation), and several other SCAD survivors tell our stories here:

The SCAD Ladies Stand Up: Stories of Patient Empowerment (note: it's a PDF).

Thanks to John at Inspire, and the whole team, who worked to put this piece together and publish it.

But what about the men?

At almost every event where I'm working in my capacity as a WomenHeart Champion, some dudebro will come up to me and say some variation on, "Where's the men's group?"

Then they get a smug look on their faces as if they've just scored a major "Gotcha!" and they scuttle away, oh so pleased with themselves for their clever little bon mot.

Oh honey, I want to say to them, it's ALWAYS about the men.

Almost 75 percent of the research on heart disease in the US is done on men; women comprise only 27 percent of heart disease research subjects in this country.

91 percent of family doctors are unaware that heart disease kills more WOMEN than men each year--medical professionals whose job it is to know these things DON'T KNOW.

Women who present with the exact same symptoms as men are often told that it's our gall bladder, it's anxiety, it's stress, it's acid reflux, anything but what it actually is--our hearts.

(Facts and figures above are from the WomenHeart website and the American Heart Association website.)

A study was done a few years ago where groups of doctors were given imaginary case histories for one of two patients, either a 47-year-old male or 56-year-old female. Aside from the age, everything else was identical. The two patients had all the risk factors for a heart attack; some of the case histories, male and female, also included a note about job stress.

In the case studies where stress was a factor, the majority of the doctors--a mix of family physicians and internists--referred the male patient to a cardiologist; the majority referred the female to a psychologist.

Read that again: the man gets sent to a cardiologist; the little woman gets told that it's all in her head.

(That's from a study done by Gabrielle R. Chiaramonte; details here.)

As if that's not enough, check out this ABC news video on ingrained, institutionalized medical sexism. Ladies, brace yourselves for a blood pressure spike:

'Medical Sexism': Women's heart disease symptoms often dismissed | abc7.com

Women are less likely than men to receive life-saving clot-busting drugs, less likely to even receive simple treatments like an aspirin or a nitro patch. Women are less likely to be referred for cardiac rehab. Women have a 28 percent increased risk of dying as compared to men within the first year after a heart attack (perhaps because of the fact that we're less likely to get adequate treatment, as noted).

(And those stats and figures are from, respectively: Dey S, Flather, MD, Breiger D, et al. "Sex-related differences in the presentation, treatment and outcomes among patients with acute coronary syndromes: the Global Registry of Acute Coronary Events." Heart. 2009;95(1):20-6; and Curtis LH, Al-Khatib SM, Shea AM, et al. "Sex Differences in the Use of Implantable Cardioverter-Defibrillators for Primary and Secondary Prevention of Sudden Cardiac Death." JAMA. 2007;298(13):1517-1524.)

It's not "us versus them" in that we women heart patients and advocates are taking something away from the male heart patients. What we're striving for is EQUAL access to correct diagnoses and treatment.

In order to do that, we have to address the current inequalities--you can't change the fact that because you're male, you're automatically going to be treated differently if you complain of chest pain than a woman is going to be.

In general, men don't have to fight to be believed if they show up in a doctor's office and say that they think they're having a heart attack.

We do. We have. Every single day.

That's part of WomenHeart's mission--to educate women (and men) about heart disease, our #1 killer, to educate the medical community, and to advocate for equal access and treatment.

We don't want to take away the men's piece of pie (access to accurate diagnosis and correct treatment); we want to ensure that everyone has pie.

And everyone wants pie, right?

Did the AHA Heart Walk Yesterday

Did the AHA's Heart Walk today with my friend Christine and with fellow heart-sister Tesca and her family--thanks again for walking with me, everyone!

We got to the site a little after 1pm and walked around, checking out all the booths. I still had my red "survivor" cap from last year so I didn't get another one but did get a 2010 Heart Walk pin.

There were around 15,000 people at the event (WRAL says 20,000), and a fair few peeled off after the one-mile walk, while we die-hards did the whole (almost) three miles.

At the last turn before crossing the finish line, the people who'd already finished kind of clustered up and were cheering on the people still walking. As I neared the finish line, an older gentleman also wearing a "survivor" hat came up and shook my hand and congratulated me.

I have to remember not to pair up these particular socks with my running shoes again; I'm getting a big blister on the outside of my right foot between my ankle and heel.

One thing that stood out was the lack of water stations along the course. I did the one-mile walk last year and there was no water on the course, but I thought surely they'd have it for the three-mile walk. They had water beforehand, and apples. Afterward, there were Subway sandwiches, apples, and Diet Pepsi, but Chris and I both said, "Eeew no," to the Diet Pepsi. Note to self: if walking next year, grab all the water bottles I can carry before the walk starts.

One cool thing was that they had Duke's mobile cath lab there, so I went in and looked around and listened while they talked about what happens during a heart cath. It was nice to see all the equipment and such from an upright position, as opposed to laying down and drugged. It was a little freaky, but my feeling is that exposure will help.

Last year, in preparation for the WomenHeart Symposium at the Mayo Clinic, they'd sent us a textbook and one of the chapters we had to read was on heart procedures. I thought I was doing fine and I actually had sat down to eat supper while reading about heart caths.

I got a few paragraphs in and looked at the detailed illustrations, and had a panic attack. I started getting lightheaded and short of breath and my vision was starting to tunnel. I had to get my husband to come help me upstairs so I could lay down for a little while and wait for the feelings to subside.


While at Mayo, we had a chance to tour a cath lab, and I did it. I was worried some about having another panic attack, but again, seeing everything while standing up seemed to make a difference, and it was good to see actual examples of stents. They're really small, about the size of the spring from a ballpoint pen.

As for this year's Heart Walk, the weirdest giveaway goes to UNC Cardiovascular--most booths had something at least vaguely heart-related, you know, healthy recipe cards, water bottles, etc. UNC has now ensured that whenever Paul and I need it, we have MORE COWBELL. That's right, they were giving away cowbells. :)

Thanks again to everyone who came out and walked with me, and who sent donations.

Networking--More Ways to Find Local WomenHeart Groups

Now there's a WomenHeart Meetup for the Triangle area:
http://www.meetup.com/Triangle-WomenHeart/


And we have a FaceBook page, too:
http://www.facebook.com/group.php?gid=136417453062785


This afternoon was what I hope will be the first of many annual Triangle WomenHeart cookouts, at Lake Crabtree County Park near the RDU airport. We had about 15 women there, which is great turnout for one of our events, and with the overcast skies and drizzle, temperatures stayed in the high 70s; it was quite comfortable most of the time.

Everyone really seemed to enjoy sharing her own story of heart disease, even the ones who are part of the group not because they have it, but because they have a strong family history, and/or they have a lot of risk factors (diabetes, weight, high blood pressure, etc.).

The age range was good, too; we had a couple of older ladies in their 70s, and some young ones in their 30s, and everything in between.

Good food, and good companionship. I'm hoping to do it again next year, and the year after that, and the year after that.

Getting some press for women's heart disease

I'm in the February issue of Carolina Woman magazine:

http://www.carolinawoman.com/body02-10.php

In mid-January I sent out a press release to the various local media outlets, asking them to please do something for National Wear Red Day and American Heart Month, and included a bit of my own story.

This time I got two nibbles. Fingers crossed, there's going to be a story soon in the local daily paper with another young heart attack survivor and and me, and then a couple weeks ago Carolina Woman magazine called and said they wanted to run my press release as kind of a "letter to the editor." So of course I said great, and now there it is. :)

Of course if I'd known they were going to run it as-is with no chance to alter it, I would've put more in it about the three local WomenHeart support groups, but at least the website is in there.

In other heart-healthy news, I've just registered for the women-only Ramblin' Rose Triathlon.

Quick Symposium Notes

Tired, but here are some quick Symposium thoughts:

My brain is full. Crammed full of knowledge--medical, scientific, networking skills, so much to remember.

My heart is full. Full of love and appreciation of my new-found heart sisters from around the country.

Here are a few quick photos on my Flickr page from various events throughout the five days at Mayo:

http://www.flickr.com/photos/tags/womenheartsymposium2009/

From our tour of the Mayo Clinic: the cardiac cath lab--good to see while standing up instead of lying down, let me tell you. Two pictures from the day we spent out at Assisi Heights: the statue of St. Francis is from the inside, and the courtyard shows the snow that greeted us that morning.

Jyl is a belly dancer and a WomenHeart Champion. Jan, beside her, is local to me and a WomenHeart Champion. I am a WomenHeart Champion. Stephanie, in the picture with me, is a WomenHeart Champion. The pictures of us are from our dressy dinner/reception on Tuesday night.

I will upload more pictures soon but I'm also hopeful that other Symposium attendees will share some of theirs; a lot of mine ended up being blurry, alas.

I got into the WomenHeart Symposium!

Great news--I've been accepted into the WomenHeart Science & Leadership Symposium!

http://www.womenheart.org/programsEvents/programs/national.cfm

It's four days at the Mayo Clinic in Rochester, MN and is a fantastic opportunity not only to train to become a champion spokeswoman for women with heart disease but to connect with other women who've been through similar things. I'm really excited. :) I sent my application off, then tried to just put it out of my mind, because at that point the decision was out of my hands.

I was a little nervous opening the big envelope from WomenHeart last night; I cracked it open and peeked in cautiously, saw the word "congratulations," grinned, and only then opened it the rest of the way.

Need a fresh pair of eyes

Hey everyone, especially my editor and proofreader friends--do any of you have a few minutes to look over my WomenHeart Symposium application for me, to catch any typos or other embarrassing mistakes?

If so, please ping me at whatever email address you have for me, and I'll send you my application. It's due tomorrow, but I'd like to get it turned in this afternoon if possible to beat the last-minute rush... Thanks very much. :)

Call for Submissions: A heart-related fanzine

Since my heart attack and angioplasty/stents, I've been trying to think of a fannish way to get the word out about heart disease. I was pondering this more over the weekend while I volunteered at a health expo on Saturday, at the WomenHeart booth, handing out brochures and information.

Well, on my way to work this morning, a lightbulb went off. Fans don't want to read brochures, we want to read *fanzines*. So I figured I'd try to solicit as many stories from as many fannish heart patients as I could, put them all together in a one-shot, and distribute it far and wide. Maybe even make a nifty, limited-edition button to give to all the contributors.

The last page would be an "In Memoriam" page, or as one my favorite TV shows, Babylon 5 says, "To absent friends, in memory still bright..." with a list of fans who've passed on from heart disease/heart attacks/etc.

Toward that end, this is a call for contributions for my one-shot, tentatively called A CHANGE OF HEART. Stories, poems, letters of comment, and artwork from fans who've had heart-related illness and/or surgery are welcome. If you yourself aren't the heart patient, but an immediate family member is/was, I'd also be glad to hear from you. Emailed submissions are strongly preferred; please send to laurahcory [at] yah00 -- but if you know someone who doesn't do email, ping me and I'll send you my snail-addy to pass along. And I need names for the "In Memoriam" page.

Deadline for submissions is July 24th. That's more than six weeks out and gives me time to put the thing together and send some copies up to Worldcon.

Permission granted to forward this to other fannish places.

Call for Submissions: A heart-related fanzine

Since my heart attack and angioplasty/stents, I've been trying to think of a fannish way to get the word out about heart disease. I was pondering this more over the weekend while I volunteered at a health expo on Saturday, at the WomenHeart booth, handing out brochures and information.

Well, on my way to work this morning, a lightbulb went off. Fans don't want to read brochures, we want to read *fanzines*. So I figured I'd try to solicit as many stories from as many fannish heart patients as I could, put them all together in a one-shot, and distribute it far and wide. Maybe even make a nifty, limited-edition button to give to all the contributors.

The last page would be an "In Memoriam" page, or as one my favorite TV shows, Babylon 5 says, "To absent friends, in memory still bright..." with a list of fans who've passed on from heart disease/heart attacks/etc.

Toward that end, this is a call for contributions for my one-shot, tentatively called A CHANGE OF HEART. Stories, poems, letters of comment, and artwork from fans who've had heart-related illness and/or surgery are welcome. If you yourself aren't the heart patient, but an immediate family member is/was, I'd also be glad to hear from you. Emailed submissions are strongly preferred; please send to laurahcory [at] yah00 -- but if you know someone who doesn't do email, ping me and I'll send you my snail-addy to pass along. And I need names for the "In Memoriam" page.

Deadline for submissions is July 24th. That's more than six weeks out and gives me time to put the thing together and send some copies up to Worldcon.

Permission granted to forward this to other fannish places.

Found some other women who've survived SCAD

One thing that's helped is that I've found some other women who've survived spontaneous coronary artery dissection (SCAD), and I've joined an online support community. This is mostly for my own info, but in case anyone else ever needs to refer a female friend or relative to a support group for women with heart problems, here's a little banner thingie:



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