Rise Up, Oh Heart, For There is Another Battle to Win

andreashettle:

avioletmind:

Are medical professionals biased against the mentally ill?

THE first time it was an ear, nose and throat doctor. I had an emergency visit for an ear infection, which was causing a level of pain I hadn’t experienced since giving birth. He looked at the list of drugs I was taking for my bipolar disorder and closed my chart.

“I don’t feel comfortable prescribing anything,” he said. “Not with everything else you’re on.” He said it was probably safe to take Tylenol and politely but firmly indicated it was time for me to go. The next day my eardrum ruptured and I was left with minor but permanent hearing loss.

Another time I was lying on the examining table when a gastroenterologist I was seeing for the first time looked at my list of drugs and shook her finger in my face. “You better get yourself together psychologically,” she said, “or your stomach is never going to get any better.”

If you met me, you’d never know I was mentally ill. In fact, I’ve gone through most of my adult life without anyone ever knowing — except when I’ve had to reveal it to a doctor. And that revelation changes everything. It wipes clean the rest of my résumé, my education, my accomplishments, reduces me to a diagnosis.

I was surprised when, after one of these run-ins, my psychopharmacologist said this sort of behavior was all too common. At least 14 studies have shown that patients with a serious mental illness receive worse medical care than “normal” people. Last year the World Health Organization called the stigma and discrimination endured by people with mental health conditions “a hidden human rights emergency.”

I never knew it until I started poking around, but this particular kind of discriminatory doctoring has a name. It’s called “diagnostic overshadowing.”

According to a review of studies done by the Institute of Psychiatry at King’s College, London, it happens a lot. As a result, people with a serious mental illness — including bipolar disorder, major depression, schizophrenia and schizoaffective disorder — end up with wrong diagnoses and are under-treated.

That is a problem, because if you are given one of these diagnoses you probably also suffer from one or more chronic physical conditions: though no one quite knows why, migraines, irritable bowel syndrome and mitral valve prolapse often go hand in hand with bipolar disorder.

Less mysterious is the weight gain associated with most of the drugs used to treat bipolar disorder and schizophrenia, which can easily snowball into diabetes, high blood pressure, high cholesterol and cardiovascular disease. The drugs can also sedate you into a state of zombiedom, which can make going to the gym — or even getting off your couch — virtually impossible.

It’s little wonder that many people with a serious mental illness don’t seek medical attention when they need it. As a result, many of us end up in emergency rooms — where doctors, confronted with an endless stream of drug addicts who come to their door looking for an easy fix — are often all too willing to equate mental illness with drug-seeking behavior and refuse to prescribe pain medication.

I should know: a few years ago I had a persistent migraine, and after weeks trying to get an appointment with any of the handful of headache specialists in New York City, I broke down and went to the E.R. My husband filled out paperwork and gave the nurse my list of drugs. The doctors finally agreed to give me something stronger than what my psychopharmacologist could prescribe for the pain and hooked me up to an IV.

I lay there for hours wearing sunglasses to block out the fluorescent light, waiting for the pain relievers to kick in. But the headache continued. “They gave you saline and electrolytes,” my psychopharmacologist said later. “Welcome to being bipolar.”

When I finally saw the specialist two weeks later (during which time my symptoms included numbness and muscle weakness), she accused me of being “a serious cocaine user” (I don’t touch the stuff) and of displaying symptoms of “la belle indifference,” a 19th-century term for a kind of hysteria in which the patient converts emotional symptoms into physical ones — i.e., it was all in my head.

Indeed, given my experience over the last two decades, I shouldn’t have been surprised by the statistics I found in the exhaustive report “Morbidity and Mortality in People with Serious Mental Illness,” a review of studies published in 2006 that provides an overview of recommendations and general call to arms by the National Association of State Mental Health Program Directors. The take-away: people who suffer from a serious mental illness and use the public health care system die 25 years earlier than those without one.

True, suicide is a big factor, accounting for 30 to 40 percent of early deaths. But 60 percent die of preventable or treatable conditions. First on the list is, unsurprisingly, cardiovascular disease. Two studies showed that patients with both a mental illness and a cardiovascular condition received about half the number of follow-up interventions, like bypass surgery or cardiac catheterization, after having a heart attack than did the “normal” cardiac patients.

The report also contains a list of policy recommendations, including designating patients with serious mental illnesses as a high-priority population; coordinating and integrating mental and physical health care for such people; education for health care workers and patients; and a quality-improvement process that supports increased access to physical health care and ensures appropriate prevention, screening and treatment services.

Such changes, if implemented, might make a real difference. And after seven years of no change, signs of movement are popping up, particularly among academic programs aimed at increasing awareness of mental health issues. Several major medical schools now have programs in the medical humanities, an emerging field that draws on diverse disciplines including the visual arts, humanities, music and science to make medical students think differently about their patients. And Johns Hopkins offers a doctor of public health with a specialization in mental health.

Perhaps the most notable of these efforts — and so far the only one of its kind — is the narrative medicine program at Columbia University Medical Center, which starts with the premise that there is a disconnect between health care and patients and that health care workers need to start listening to what their patients are telling them, and not just looking at what’s written on their charts.

According to the program’s mission statement, “The effective practice of health care requires the ability to recognize, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence is a model for humane and effective medical practice.”

We can only hope that humanizing programs like this one become a requirement for all health care workers. Maybe then “first, do no harm” will apply to everyone, even the mentally ill.

By JULIANN GAREYPublished: August 10, 2013

The author of the novel “Too Bright to Hear Too Loud to See” and a co-editor of “Voices of Bipolar Disorder: The Healing Companion.”

Reblogging because this is the sort of thing that needs signal boosting the heck out of it. Probably many of the people who see this in my Tumblr are people who already know from first-hand experience as a patient. Probably most of the people who even know my Tumblr exists are not in a position to perpetuate this problem (because they aren’t doctors).  But I figure if more people get info like this circulating, maybe eventually someone in a better position to reach more doctors with this kind of information and open serious dialogue about how to address the problem will come across this.

Until then, at least a better informed patient population can, I hope, be in a better position to advocate for themselves—if not always as individuals then perhaps as groups.

(via ifeelbetterer)

slyrider:

celestialwinged:

akiameokami:

phiralovesloki:

frenchswissborder:

onlyblackgirl:

foryoursexualinformation:

And in other news, water is wet

Not like women have been telling y'all this since the beginning of time or anything.

I mean, yeah, at one point three years ago I was curled up in a fetal position literally screaming/crying/gasping for breath on my bed in my dorm room, so my response to this headline is basically, “No shit.”

No wonder women are so likely to ignore heart disease/attack symptoms. If something isn’t as bad as my cramps, I figure it can’t be that bad.

THAT LAST COMMENT

No kidding! But when I said that as a kid my parents would tell me it wasn’t that bad?! Also just learned that women with weaker immune systems, it’s worse anyways.

@words-writ-in-starlight

slyrider:

pastrygeckos:

journalsarepointless:

welcome-to-fandomonium-blog:

bando–grand-scamyon:

phoenixfire-thewizardgoddess:

Early on a Wednesday morning, I heard an anguished cry—then silence.

I rushed into the bedroom and watched my wife, Rachel, stumble from the bathroom, doubled over, hugging herself in pain.

“Something’s wrong,” she gasped.

This scared me. Rachel’s not the type to sound the alarm over every pinch or twinge. She cut her finger badly once, when we lived in Iowa City, and joked all the way to Mercy Hospital as the rag wrapped around the wound reddened with her blood. Once, hobbled by a training injury in the days before a marathon, she limped across the finish line anyway.

So when I saw Rachel collapse on our bed, her hands grasping and ungrasping like an infant’s, I called the ambulance. I gave the dispatcher our address, then helped my wife to the bathroom to vomit.

I don’t know how long it took for the ambulance to reach us that Wednesday morning. Pain and panic have a way of distorting time, ballooning it, then compressing it again. But when we heard the sirens wailing somewhere far away, my whole body flooded with relief.

I didn’t know our wait was just beginning.

I buzzed the EMTs into our apartment. We answered their questions: When did the pain start? That morning. Where was it on a scale of one to 10, with 10 being worst?

“Eleven,” Rachel croaked.

As we loaded into the ambulance, here’s what we didn’t know: Rachel had an ovarian cyst, a fairly common thing. But it had grown, undetected, until it was so large that it finally weighed her ovary down, twisting the fallopian tube like you’d wring out a sponge. This is called ovarian torsion, and it creates the kind of organ-failure pain few people experience and live to tell about.

“Ovarian torsion represents a true surgical emergency,” says an article in the medical journal Case Reports in Emergency Medicine. “High clinical suspicion is important. … Ramifications include ovarian loss, intra-abdominal infection, sepsis, and even death.” The best chance of salvaging a torsed ovary is surgery within eight hours of when the pain starts.

* * *

There is nothing like witnessing a loved one in deadly agony. Your muscles swell with the blood they need to fight or run. I felt like I could bend iron, tear nylon, through the 10-minute ambulance ride and as we entered the windowless basement hallways of the hospital.

And there we stopped. The intake line was long—a row of cots stretched down the darkened hall. Someone wheeled a gurney out for Rachel. Shaking, she got herself between the sheets, lay down, and officially became a patient.

We didn’t know her ovary was dying, calling out in the starkest language the body has.

Emergency-room patients are supposed to be immediately assessed and treated according to the urgency of their condition. Most hospitals use the Emergency Severity Index, a five-level system that categorizes patients on a scale from “resuscitate” (treat immediately) to “non-urgent” (treat within two to 24 hours).

I knew which end of the spectrum we were on. Rachel was nearly crucified with pain, her arms gripping the metal rails blanched-knuckle tight. I flagged down the first nurse I could.

“My wife,” I said. “I’ve never seen her like this. Something’s wrong, you have to see her.”

“She’ll have to wait her turn,” she said. Other nurses’ reactions ranged from dismissive to condescending. “You’re just feeling a little pain, honey,” one of them told Rachel, all but patting her head.

We didn’t know her ovary was dying, calling out in the starkest language the body has. I saw only the way Rachel’s whole face twisted with the pain.

Soon, I started to realize—in a kind of panic—that there was no system of triage in effect. The other patients in the line slept peacefully, or stared up at the ceiling, bored, or chatted with their loved ones. It seemed that arrival order, not symptom severity, would determine when we’d be seen.

As we neared the ward’s open door, a nurse came to take Rachel’s blood pressure. By then, Rachel was writhing so uncontrollably that the nurse couldn’t get her reading.

She sighed and put down her squeezebox.

“You’ll have to sit still, or we’ll just have to start over,” she said.

Finally, we pulled her bed inside. They strapped a plastic bracelet, like half a handcuff, around Rachel’s wrist.

* * *

From an early age we’re taught to observe basic social codes: Be polite. Ask nicely.Wait your turn. But during an emergency, established codes evaporate—this is why ambulances can run red lights and drive on the wrong side of the road. I found myself pleading, uselessly, for that kind of special treatment. I kept having the strange impulse to take out my phone and call 911, as if that might transport us back to an urgent, responsive world where emergencies exist.

The average emergency-room patient in the U.S. waits 28 minutes before seeing a doctor. I later learned that at Brooklyn Hospital Center, where we were, the average wait was nearly three times as long, an hour and 49 minutes. Our wait would be much, much longer.

Everyone we encountered worked to assure me this was not an emergency. “Stones,” one of the nurses had pronounced. That made sense. I could believe that. I knew that kidney stones caused agony but never death. She’d be fine, I convinced myself, if I could only get her something for the pain.

By 10 a.m., Rachel’s cot had moved into the “red zone” of the E.R., a square room with maybe 30 beds pushed up against three walls. She hardly noticed when the attending physician came and visited her bed; I almost missed him, too. He never touched her body. He asked a few quick questions, and then left. His visit was so brief it didn’t register that he was the person overseeing Rachel’s care.

Around 10:45, someone came with an inverted vial and began to strap a tourniquet around Rachel’s trembling arm. We didn’t know it, but the doctor had prescribed the standard pain-management treatment for patients with kidney stones: hydromorphone for the pain, followed by a CT scan.

The pain medicine started seeping in. Rachel fell into a kind of shadow consciousness, awake but silent, her mouth frozen in an awful, anguished scowl. But for the first time that morning, she rested.

* * *

Leslie Jamison’s essay “Grand Unified Theory of Female Pain” examines ways that different forms of female suffering are minimized, mocked, coaxed into silence. In an interview included in her book The Empathy Exams, she discussed the piece, saying: “Months after I wrote that essay, one of my best friends had an experience where she was in a serious amount of pain that wasn’t taken seriously at the ER.”

She was talking about Rachel.  

“Women are likely to be treated less aggressively until they prove that they are as sick as male patients.”

“That to me felt like this deeply personal and deeply upsetting embodiment of what was at stake,” she said. “Not just on the side of the medical establishment—where female pain might be perceived as constructed or exaggerated—but on the side of the woman herself: My friend has been reckoning in a sustained way about her own fears about coming across as melodramatic.”

“Female pain might be perceived as constructed or exaggerated”: We saw this from the moment we entered the hospital, as the staff downplayed Rachel’s pain, even plain ignored it. In her essay, Jamison refers back to “The Girl Who Cried Pain,” a study identifying ways gender bias tends to play out in clinical pain management. Women are  “more likely to be treated less aggressively in their initial encounters with the health-care system until they ‘prove that they are as sick as male patients,’” the study concludes—a phenomenon referred to in the medical community as “Yentl Syndrome.”

In the hospital, a lab tech made small talk, asked me how I like living in Brooklyn, while my wife struggled to hold still enough for the CT scan to take a clear shot of her abdomen.

“Lot of patients to get to, honey,” we heard, again and again, when we begged for stronger painkillers. “Don’t cry.”

I felt certain of this: The diagnosis of kidney stones—repeated by the nurses and confirmed by the attending physician’s prescribed course of treatment—was a denial of the specifically female nature of Rachel’s pain. A more careful examiner would have seen the need for gynecological evaluation; later, doctors told us that Rachel’s swollen ovary was likely palpable through the surface of her skin. But this particular ER, like many in the United States, had no attending OB-GYN. And every nurse’s shrug seemed to say, “Women cry—what can you do?”

Nationwide, men wait an average of 49 minutes before receiving an analgesic for acute abdominal pain. Women wait an average of 65 minutes for the same thing. Rachel waited somewhere between 90 minutes and two hours.

“My friend has been reckoning in a sustained way about her own fears about coming across as melodramatic.” Rachel does struggle with this, even now. How long is it appropriate to continue to process a traumatic event through language, through repeated retellings? Friends have heard the story, and still she finds herself searching for language to tell it again, again, as if the experience is a vast terrain that can never be fully circumscribed by words. Still, in the throes of debilitating pain, she tried to bite her lip, wait her turn, be good for the doctors.

For hours, nothing happened. Around 3 o’clock, we got the CT scan and came back to the ER. Otherwise, Rachel lay there, half-asleep, suffering and silent. Later, she’d tell me that the hydromorphone didn’t really stop the pain—just numbed it slightly. Mostly, it made her feel sedated, too tired to fight.

If she had been alone, with no one to agitate for her care, there’s no telling how long she might have waited.

Eventually, the doctor—the man who’d come to Rachel’s bedside briefly, and just once—packed his briefcase and left. He’d been around the ER all day, mostly staring into a computer. We only found out later he’d been the one with the power to rescue or forget us.

When a younger woman came on duty to take his place, I flagged her down. I told her we were waiting on the results of a CT scan, and I hassled her until she agreed to see if the results had come in.

When she pulled up Rachel’s file, her eyes widened.

“What is this mess?” she said. Her pupils flicked as she scanned the page, the screen reflected in her eyes.

“Oh my god,” she murmured, as though I wasn’t standing there to hear. “He never did an exam.”

The male doctor had prescribed the standard treatment for kidney stones—Dilauded for the pain, a CT scan to confirm the presence of the stones. In all the hours Rachel spent under his care, he’d never checked back after his initial visit. He was that sure. As far as he was concerned, his job was done.

If Rachel had been alone, with no one to agitate for her care, there’s no telling how long she might have waited.

It was almost another hour before we got the CT results. But when they came, they changed everything.

“She has a large mass in her abdomen,” the female doctor said. “We don’t know what it is.”

That’s when we lost it. Not just because our minds filled then with words liketumor and cancer and malignant. Not just because Rachel had gone half crazy with the waiting and the pain. It was because we’d asked to wait our turn all through the day—longer than a standard office shift—only to find out we’d been an emergency all along.

Suddenly, the world responded with the urgency we wanted. I helped a nurse push Rachel’s cot down a long hallway, and I ran beside her in a mad dash to make the ultrasound lab before it closed. It seemed impossible, but we were told that if we didn’t catch the tech before he left, Rachel’s care would have to be delayed until morning.

“Whatever happens,” Rachel told me while the tech prepared the machine, “don’t let me stay here through the night. I won’t make it. I don’t care what they tell you—I know I won’t.”

Soon, the tech was peering inside Rachel through a gray screen. I couldn’t see what he saw, so I watched his face. His features rearranged into a disbelieving grimace.

By then, Rachel and I were grasping at straws. We thought: cancer. We thought: hysterectomy. Lying there in the dim light, Rachel almost seemed relieved.

“I can live without my uterus,” she said, with a soft, weak smile. “They can take it out, and I’ll get by.”

She’d make the tradeoff gladly, if it meant the pain would stop.

After the ultrasound, we led the gurney—slowly, this time—down the long hall to the ER, which by then was  completely crammed with beds. Trying to find a spot for Rachel’s cot was like navigating rush-hour traffic.

Then came more bad news. At 8 p.m., they had to clear the floor for rounds. Anyone who was not a nurse, or lying in a bed, had to leave the premises until visiting hours began again at 9.

When they let me back in an hour later, I found Rachel alone in a side room of the ER. So much had happened. Another doctor had told her the mass was her ovary, she said. She had something called ovarian torsion—the fallopian-tube twists, cutting off blood. There was no saving it. They’d have to take it out.

Rachel seemed confident and ready.

“He’s a good doctor,” she said. “He couldn’t believe that they left me here all day. He knows how much it hurts.”

When I met the surgery team, I saw Rachel was right. Talking with them, the words we’d used all day—excruciating, emergency, eleven—registered with real and urgent meaning. They wanted to help.

By 10:30, everything was ready. Rachel and I said goodbye outside the surgery room, 14 and a half hours from when her pain had started.

* * *

Rachel’s physical scars are healing, and she can go on the long runs she loves, but she’s still grappling with the psychic toll—what she calls “the trauma of not being seen.” She has nightmares, some nights. I wake her up when her limbs start twitching.

Sometimes we inspect the scars on her body together, looking at the way the pink, raised skin starts blending into ordinary flesh. Maybe one day, they’ll become invisible. Maybe they never will.

This made me SOOOO FUCKING ANGRY

I’m angry and sad and so bloody relieved she’s even ALIVE. I was preparing myself for him to say they faffed around all day and killed my wife. Because they don’t take women seriously. Women endure the pain of childbirth. We know what real pain is. We know when something is WRONG!

The accuracy of this is so intense and so scary… I feel like I’m a weird position, as a transman with SO many medical issues my whole life, to have been able to see it from both perspectives and here’s something I realized reading this…

IT CHANGED.

I hadn’t thought about it until I read this and instantly found myself looking at all my ER experiences (and there have been more than I’d like to admit).  

As a “woman” I spent a great deal of time in the waiting room, clutching my sides or writing in chairs.  I was told for over a year (four emergency room visits and countless primary appointments) that I had kidney stones, only to later be rushed into emergency spinal surgery to prevent paralysis for something that could have been corrected with simple physical therapy.  I was threatened with not receiving pain medication if I didn’t calm down and/or accept the (incorrect) diagnosis.  My desperation in these places was so great, and so difficult, that my depressed mind, with this as a catalyst I sometimes thought death might be preferable than going to the ER and I had to physically forced to seek help.

After growing more firm in my visual representation of a man, I’ve been to the ER three times and my primary countless.  I can tell you right now several things: the staff was nicer, more sympathetic, and actually listened to me.  I went to the worst hospital in my current area just two months ago and people said they were astonished that I had decent help… No, correction, women told me they were astonished I got helped as “fast” as I did (two-three hours in the waiting room).  Doctors at all of these ER visits talked to me about what I might have, what they thought, what I thought….

I’ve received better medical help in the three years I’ve visually stood as a man than in more than twenty-five years appearing as a woman.  

Our medical system was already shit.  It was back then.  It is now.  That is no excuse for women to be treated this way.  There is absolutely no reason a doctor should ever, ever dismiss a patients concerns.  The truth of it is that we are in our bodies, all people regardless of any visual traits, and we know when they’re acting up.  This is not okay.

And I will end this rant here to keep from diving into more details about our ludicrous medical system. 

I think you guys know I already feel strongly about this, and I’m really glad there’s an article up about this from a male perspective.

@words-writ-in-starlight

amuseoffyre:

anonymousnerdgirl:

whipsticka:

janes-nature-garden:

is it bad that I want to become pregnant one day

“A clinic in Ohio recently started screening women for the ground-breaking procedure, which would allow women to transplant their uterus into a woman who doesn’t have one.

The transplant could be conducted on a woman ‘born without a uterus, or who had it removed or have uterine damage’ – this would make trans women eligible for the procedure.

A 26-year-old woman who is undergoing the screening process told The Times: ‘I crave that experience.

‘I want the morning sickness, the backaches, the feet swelling. I want to feel the baby move. That is something I’ve wanted for as long as I can remember.’

Dr Christine McGinn, a plastic surgeon, told Yahoo News: ‘The human drive to be a mother for a woman is a very serious thing.

‘Transgender women are no different.’”

Medical miracle.

I’d donate mine :) I’m not using it.

(via cthulhu-with-a-fez)