Notes on Refuge

 

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Notes

#NotesOnRefuge • IPR •••

https://www.theatlantic.com/family/archive/2018/08/womens-health-care-gaslighting/567149/

The Doctor Doesn’t Listen to Her. But the Media Is Starting To.

Physicians have long dismissed or downplayed women’s sexual- and reproductive-health concerns—but in 2018, stories about “health-care gaslighting” are consistently breaking through to the mainstream.

Ashley Fetters is a staff writer at The Atlantic.

Twitter

Aug 10, 2018

Bettmann / Getty / The Atlantic

After a while, the true-life horror stories women tell about their struggles to get reproductive health care start to bleed together. They almost always feature some variation on the same character: the doctor who waves a hand and says, “You’ll be fine,” or “That’s just in your head,” or “Take a Tylenol.” They follow an ominous three-act structure, in which a woman expresses concern about a sexual or reproductive issue to a doctor; the doctor demurs; later, after either an obstacle course of doctor visits or a nightmare scenario coming to life, a physician at last acknowledges her pain was real and present the whole time. Sometimes there’s a quietly gloomy boyfriend or husband in a secondary-character role, frustrated by the strain his partner’s health issue is putting on their intimacy.

That many women have stories of medical practitioners dismissing, misdiagnosing, or cluelessly shrugging at their pain is, unfortunately, nothing new. Research cited in the Journal of Law, Medicine & Ethicsin 2001, for example, indicated that women get prescribed less pain medication than men after identical procedures (controlling for body size), are less likely to be admitted to hospitals and receive stress tests when they complain of chest pain, and are significantly more likely than men to be “undertreated” for pain by doctors. And there’s a multi-million dollar industry of questionable alternative health remedies that was arguably built at least in part on a history of doctors being dismissive toward women’s bodily health.

How doctors take women’s pain less seriously

But in 2018, these stories of neglect and unhelpfulness within women’s health care, especially women’s sexual and reproductive health care, are bubbling up to the surface—being documented, circulated, and acknowledged by public discourse—in curious abundance.

It started early in the year. In January, a widely cited Vogue cover story on the tennis great Serena Williams, who gave birth to a daughter in September of 2017, told the harrowing tale of how Williams had to urgently insist to the hospital staff in her recovery room that what she was experiencing after her C-section was a pulmonary embolism in order to get the treatment she needed to stay alive. “The nurse thought her pain medicine might be making her confused,” the story reads. A month later, Vogue published an essay by the Girls creator Lena Dunham on her choice to have a hysterectomy at age 31 to end her struggle with what she understood to be endometriosis. “I had to work so hard to have my pain acknowledged,” she writes. “And while I’ve been battling endometriosis for a decade and this will be my ninth surgical procedure, no doctor has ever confirmed this for me.” After her uterus is removed and she wakes up in a recovery room, she writes, the doctors are eager to tell her she was right: her uterus is “worse than anyone could have imagined.”

Then, in April, The New York Times published Linda Villarosa’s revealing report on the dangerous endeavor of being black and pregnant in America, a phenomenon partly attributed to medical practitioners’ “dismissal of legitimate concerns and symptoms.” The story’s primary character, 23-year-old New Orleans mother of two, Simone Landrum, recalls being told by a doctor to calm down and take Tylenol when she complained of headaches during a particularly exhausting pregnancy; those headaches were later found to be caused by pre-eclampsia, a pregnancy complication that causes high blood pressure and can result in the placenta separating from the uterus before the baby is born. This happened to Landrum, and her pregnancy ended in a stillbirth.

The stories kept coming. Netflix’s The Bleeding Edge, a documentary released last month, is primarily about the poor testing of many medical devices on the market, but it nonetheless also functions as an indictment of carelessness toward women’s health at the regulatory-body level. Three of the four primary narratives are about medical devices hastily approved by the FDA and marketed to women as safe, easy solutions for fertility- and childbirth-related issues. One prominently featured woman whose medical device—the birth-control implant Essure—lands her in the hospital so many times she loses her job, her home, and her kids over the course of the documentary, recalls being told by a doctor that her abnormally heavy, persistent vaginal bleeding after its insertion is “because she’s Latina” and that her problems are all in her head.

The new KCRW podcast Bodies, a series about medical mysteries in women’s health that launched in July, kicked off its run with the story of a woman in her twenties who experiences deep, burning pain during sex and is initially told by a doctor that nothing’s wrong, lots of women have pain during sex, and that she should just wait and it’ll probably go away. After getting a referral for a specialist from a friend who visited 20 doctors over the course of seven years before getting a diagnosis, she’s diagnosed with and successfully treated for a type of vulvodynia—which the American Journal of Obstetrics and Gynecology describes as “common” (though “rarely diagnosed”).

Sasha Ottey calls this phenomenon “health-care gaslighting.” Ottey founded the Atlanta-based nonprofit PCOS Challenge: The National Polycystic Ovary Syndrome Association in 2009 to raise awareness of PCOS, a hormonal disorder affecting the ovaries that’s often linked to infertility, diabetes, and pelvic pain. Despite the fact that PCOS was first identified and researched in 1935 and the CDC has estimated it affects some 6 to 12 percent of adult women in the United States, many doctors still don’t recognize the symptoms. Women with PCOS and similar conditions like endometriosis and uterine fibroids, Ottey says, “have been told to suffer in silence.” Additionally, because PCOS often causes obesity or weight problems, many women with PCOS experience not just sexism but what Ottey calls “weight bias” in the health-care system. “Many women and young girls are told, ‘Oh, it’s all in your head. Just eat less and exercise more,’” says Ottey, who herself recalls being initially instructed by an endocrinologist to lose weight and come back in six months. “People who are following an eating plan and present their diaries to their physicians or nutritionists will be told, ‘You left something off. You’re lying. You’re not doing enough.’”

When missed periods are a metabolic problem

Ottey, who spearheaded the PCOS Challenge’s first-ever day of advocacy on Capitol Hill in May, has noted the recent shift in how—and where—women talk about their struggles getting the sexual and reproductive health care they need. “We’re at a critical juncture in women’s health, where women are now feeling more empowered to speak up. Because frankly, we’re frustrated,” she says. “We’re frustrated with the type of care that we’ve gotten. We’re frustrated that it sometimes takes someone decades to get a diagnosis. It’s been a year, or a few years, of being empowered and emboldened.”

Katherine Sherif, an internist at Jefferson University Hospital in Philadelphia and the director of the hospital’s women’s primary care unit, says she hears “day in and day out” from patients “about how they are not listened to [by other doctors], how they’re blown off, how a clue was missed.” Sherif believes most of the minimization of women’s health concerns is “unconscious” on the part of both male and female doctors, but blames general societal sexism for the gaps in women’s sexual and reproductive health care. Men with sexual and reproductive dysfunction have to fight for the care they need sometimes too, she points out, but “to a lesser extent” from what she’s seen.

In her 23 years practicing medicine, Sherif has received a lot of thank-you notes from women she’s treated—and “they don’t say ‘Thank you for saving my life’ or ‘Thank you for that great diagnosis,’” she says. “They say, ‘Thank you for listening to me.’ Or ‘I know we couldn’t get to the bottom of it, but thank you for being there.’” So Sherif sees a common theme in the recent flurry of high-profile expressions of disappointment in women’s reproductive health care, feminist protests against President Donald Trump, and the #MeToo movement: All three, she says, result from women feeling that their complaints, concerns, and objections aren’t being listened to.

“Perhaps it parallels what’s changing in our society,” Sherif says. “When we shine a light in those dirty, dark corners, I think it may give us courage to shed light on other things.”

Ottey, meanwhile, believes women’s increasing candor about their health- and health care-related frustrations can be traced back to the advent of social media. Ottey describes her own struggle to finally get a diagnosis and a treatment plan for PCOS in 2008 as one that made her feel “absolutely alone,” but in the years since, she says, she’s seen women with similar conditions and complaints find and support each other on platforms like Facebook and Twitter. “Women see other women, and other girls, speaking up,” she says.

Ottey’s social-media strength-in-numbers theory is borne out in The Bleeding Edge, too: Women whose health deteriorated after getting the Essure birth-control device implanted eventually created an advocacy campaign after finding each other through a Facebook group launched in 2011. Thirty-five thousand women had joined by the time The Bleeding Edge was filmed.

Angie Firmalino, the Facebook group’s founder, remembers being surprised at how many women quickly joined the group, despite it being a project she’d started just so she could warn her female friends about the device. “We became a support group for each other,” Firmalino says, as a montage of selfie videos women have posted to the group page play onscreen. “The day I was implanted, I left the hospital and I was in pain,” says one woman. “They told me to take some ibuprofen and it’ll get better,” says another.

When Firmalino researched the process by which Essure was approved for sale and implantation, she found the FDA hearings had been videotaped, but the video company that owned the tapes would only release them to her for several hundred dollars. So she posted on the Facebook group asking for donations to buy the video—clips of which are repurposed in the documentary and account for its most chilling moments. They raised $900 in 15 minutes.

We want to hear what you think about this article. Submit a letter to the editor or write to letters@theatlantic.com.

Sent from my iPhone

#NotesOnRefuge • IPR •••

When Conventional Medicine Didn’t Help my Lyme Disease, I turned to Diet and Mindfulness to Heal

The whole mess began completely out of the blue in May 2010, when I was a bright-eyed 22-year-old ready to take on the magazine publishing world. It was a sharp, stinging sensation in my left ankle after a day of exploring the city, and I chalked up the pain to a combo of unsupportive flats, concrete, and ambitious sightseeing plans.

Spoiler: It was Lyme disease, but I wouldn’t get a diagnosis for another two and a half years. Probably because there was nothing typically Lyme-y about my situation: I had no memory of a tick bite followed by flu-like symptoms and joint pain (the “classic” symptoms), and certainly no bull’s-eye rash. So instead of swift treatment, I fell down the rabbit hole.

About a week after my initial symptoms, and after my first MRI of many, I was told that I had tendonitis, which physical therapy should resolve. But then my other ankle started to hurt, and, after a few months, the pain extended to my knees, the bottoms of my feet, and even my arms. Sometimes when I stood up, it felt like electric currents were running through my toes.

The tendonitis diagnosis seemed shaky to me, so I got about five “second opinions.” Doctors ordered all kinds of tests— I even got tested for Lyme– but everything came back clean. So they kept prescribing physical therapy and strong anti-inflammatory drugs—and I kept getting worse.

After about a year, the pain became all-consuming. It was impossible to even stand for more than a few minutes—longer than that and the tendons in my ankles felt like frayed rubber bands ready to snap at any moment. Typing sent shooting pains up my arms. And all the inactivity created its own set of problems—my calves, once muscular from running, withered away to twigs, sapping my strength further.

I was so preoccupied with doctors visits that I gave no thought to my diet. Even before my downward spiral, I could stress eat with the best of ‘em—so adding on a layer of intense pain, anxiety about losing my job, and fear that I was missing out on basically everything didn’t do my eating habits any favors. I ate sugary cereal, peanut butter by the spoonful, pizza, and lots of froyo because, quite simply, it made me feel better. Of course, I then gained weight, got depressed, and my pain just kept getting worse.

At my lowest point, I was in a wheelchair and had to quit my job and move back in with my parents. As upsetting as this was, by removing an intense amount of stress from my life, for the first time in over a year, I was able to really make healing my number one priority. First step, I decided, would be to change my diet and my mindset. Sure, I could hardly walk, but I could change what I put in my mouth and how I viewed my situation.

That’s when I decided to try the Paleo diet. When I read up on it, it just made sense. The idea of drastically cleaning up and simplifying my diet to include only nutrient-rich, anti-inflammatory whole foods that would hopefully counter some of the intense pain I was feeling and prime me for healing—or at the very least, could help me drop a few pounds. So I did it for a month and then kept going. I also started going to weekly mindfulness meditation classes. One unexpected benefit of having nothing left to lose is that you’re open to the possibility of finding relief in practices you once thought were totally wacky.

While my pain only diminished slightly, I started cooking more, lost some weight, and felt a profound mental shift—I was actually feeling pretty damn chipper, which I can only attribute to ditching all those blood sugar spiking refined carbs that once wreaked havoc on my energy, and letting go of my attachment to the glamorous NYC life I thought I should be living.

Then, after a few months of trying to DIY my cure, the universe threw me a bone—I started seeing a new physical therapist, who was the first person to bring up the possibility of Lyme. At first I dismissed the notion, telling her I’d already been tested, but she went on to explain how standard Lyme tests are highly insensitive, missing nearly half of those who have the disease. So, she recommended seeing a Lyme specialist to get to the bottom of it.

I was so pumped at the idea of a diagnosis that I immersed myself in Lyme research. What surprised me was how widespread it’s become. And recently the CDC estimated that 300,000 people are newly infected with Lyme every year, about 10 times the previous estimates. Given the fact that I’d grown up in, and continued to visit, rural New England, it was certainly possible I had Lyme. So I made an appointment.

In a refreshing deviation from previous doctor-patient experiences, this Lyme specialist spent nearly three hours with me, listening to my every ache, pain, and symptom. Signs definitely pointed to Lyme, and he was confident I had the disease. Lyme can lie dormant for years until it rears its ugly head, he told me, which is probably why I couldn’t remember a tick bite since I was a teenager. It can also be exacerbated by a crappy diet high in refined carbs and sugars, which is probably why I felt my worst when I was pounding PB&Js like it was my job. His recommendation: keep up my current clean diet and take oral antibiotics (while supplementing with lots of probiotics to keep my gut in check) until I felt better. Since I had nothing to lose, I went for it.

Today, three years later—and a year since ending my treatment—I’m 98% back to normal. I still eat mostly Paleo and infuse mindfulness into my daily life, but now, instead of considering a walk to the kitchen a major physical feat, I am able to take my dog on five-mile hikes, pain free.

My battle with Lyme disease truly prompted me to slow down and tune into my diet, triggers and emotions. That’s when I began to understand that food, when chosen and eaten the right way, was my fuel and medicine. Adopting a healthy, happy relationship with food was one of the most effective healing strategies I could have chosen!

Even though it was a hellish roller coaster of an experience, I wouldn’t trade it. Through my journey, I re-learned what it means to eat healthfully by experimenting with my diet and seeing and feeling the positive results in my body. I also got in touch with my emotions and learned how to better manage stress thanks to meditation. And I got a crash course in navigating the healthcare system—learning that, when it comes to your health, you have to be your own advocate and detective sometimes, even if that means rejecting conventional medical wisdom.

https://www.furtherfood.com/paleo-diet-mindfulness-healed-my-lyme-disease/

#WarriorsAid • IPR •••

Kelly Wood writes,

‘ I’ve been living away from my mold infected home for 3 months while it gets remodeled recovering from black toxic mold exposure #stachybotris – I have made a lot of progress but it’s slow going – tomorrow I’m hosting a party to raise awareness for people who’ve been affected by this biological weapon (yes- that’s how they make those!) I’m getting ready for my party & I’m noticing my heart is racing and my skin is burning, could this be from all the excitement over tmrw? Aaah, I wish!! Nope, there’s mold hiding behind the jets causing me to be symptomatic… I’m really upset, how could this happen the day before my event? The difference between myself & most other people is this: I have people that will come pray for me, I have someone making me lunch, I have a husband who go’s to work everyday to pay for my medical bills, I have medicines at home to help me detox and I get to go sit in. Infrared Sauna later ….. u see most people don’t have these luxuries, so that’s why I’m hosting this shin-dig ….. join us tmrw evening to celebrate the fact that I’m still alive and let raise awareness and support for people that aren’t as fortunate …. much love

This is Morgan Faulkner
She is my dear friend living in a tent in the middle of nowhere because her health problems are so severe she’s practically lost everything
Well it’s going to be restored back to her .. proceeds from the party go straight to her ❤️❤️❤️ see ya tmrw night ❤️
RSVP’s are appreciated ❤️❤️ ‘

#WarriorsAid

Orig https://m.facebook.com/story.php?story_fbid=10204603353001494&id=1764619810

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#NotesOnRefuge • IPR •••

OCT. 5, 2018 / 9:10 AM

PET scans show fibromyalgia patients have inflammation in the brain

“Finding an objective neurochemical change in the brains of people who are used to being told that their problems are imaginary is pretty important,” said researcher Marco Loggia.

By

Serena Gordon, HealthDay News

https://www.upi.com/Health_News/2018/10/05/PET-scans-show-fibromyalgia-patients-have-inflammation-in-the-brain/9691538744558/

Black mold in rubber bath toys

‘ “What grows inside of them is just disgusting.”

Children are especially sensitive to mould and should stay clear from it at all costs.

The NHS says mould can produce substances that can cause an allergic reaction, irritants and, sometimes, toxic substances. ‘

https://www.facebook.com/groups/528079677235210/permalink/1593894997320334/