Monday, November 14, 2011

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?

Thursday, November 3, 2011

Cranky Pants, round 2 (Bonus: Mansplaining!)

Just when I was getting settled for the night, putting on my comfy jammies, about to go downstairs with my husband to watch an episode or two of Castle... instead of relaxing on the couch with my husband and cat, I have to pull on the cranky pants once more.

I've just spent 45 minutes with a classic mansplainer telling all of us little womenfolk that we all needed to "be assertive" and "take charge of our health" and that our healthcare was "complex" and we needed to "take responsibility."

Ya think that I, a Mayo Clinic-trained WomenHeart champion and heart attack survivor, maybe need to educate myself on heart disease and heart health?

Ya think I need to maybe ask my doctor or nurse to explain my condition (which I know more about than they do) to me?

Ya think that I need to "take responsibility," and recognize that my health is "complex," and "be assertive" about my care?

Thank you for your contributions.

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.

Wednesday, November 2, 2011

Putting on my "cranky" pants

Though some people would say that I never take my "cranky" pants off...

My brother has two sisters; he calls me the cranky one and he calls our older sister the cheap one.

Right now, cranky sister is cranky.


This article, that's why.

Specifically, the article's conclusion is what has me reaching for the cranky pants:

"According to Dr. Mukewar, 'one of the best resources for patients ideally would be physicians who also have health conditions and who can post a personal experience video on YouTube®, for instance, that would not only be medically correct, credible and trustful but would also contain that first-hand experience that patients with a disease like IBD really crave and search for online.'"

The idea that we would need, or even want, a patient-MD to blog about every possible rare disease is just mind-bogglingly ... I don't know.

I'm so cranky I'm at a loss for words.

For one thing, rare diseases are... what? RARE.

What are the chances that a doctor actually has a particular rare disease in the first place?

While having a rare disease does tend to make you an expert in that disease, it doesn't necessarily make you a good communicator if you weren't one already.

And lastly, just because someone is an MD and has a white coat doesn't mean they can't be a quack, or unscrupulous, or any more or less trustworthy as a source than we, the patients, are.

grump, grump, grump.