- 𝚕𝚘𝚟𝚎 𝚎𝚕𝚒𝚣𝚊𝚋𝚎𝚝𝚑 𝚜.

this essay by joan didion has completely changed my life i'm planning to print the whole thing and tape it to my work desk so i can stare at it all day

"To assign unanswered letters their proper weight, to free us from the expectations of others, to give us back to ourselves—there lies the great, the singular power of self-respect. Without it, one eventually discovers the final turn of the screw: one runs away to find oneself, and finds no one at home."

From heart disease to IUDs: How doctors dismiss women’s pain

Several studies support the claim that gender bias in medicine routinely leads to a denial of pain relief for female patients for a range of health conditions

One woman was told she was being “dramatic” when she pleaded for a brain scan after suffering months of headaches and pounding in her ears. It turned out she had a brain tumor. Another was ignored as she cried out in pain during a 33-hour labor. She was supposed to be getting pain medication through her epidural, but it had fallen out. Dozens of women complained of torturous pain as their vaginal walls were punctured during an egg retrieval process. They were told their pain was normal, but, in actuality, they were getting saline instead of anesthesia. These are just some of the stories of women who say their pain and suffering has been dismissed or misdiagnosed by doctors. Although these are anecdotal reports, a number of studies support the claim that women in pain often are not taken as seriously as men.

This year, the Journal of the American Heart Association reported that women who visited emergency departments with chest pain waited 29 percent longer than men to be evaluated for possible heart attacks. An analysis of 981 emergency room visits showed that women with acute abdominal pain were up to 25 percent less likely than their male counterparts to be treated with powerful opioid painkillers. Another study showed that middle-aged women with chest pain and other symptoms of heart disease were twice as likely to be diagnosed with a mental illness compared with men who had the same symptoms. “I was told I knew too much, that I was working too hard, that I was stressed out, that I was anxious,” said Ilene Ruhoy, a 53-year-old neurologist from Seattle, who had head pain and pounding in her ears. Despite having a medical degree, Ruhoy said she struggled to get doctors to order a brain scan. By the time she got it in 2015, a tennis ball-sized tumor was pushing her brain to one side. She needed surgery, but first, she rushed home, hugged her 11-year-old daughter and wrote her a letter to tell her goodbye.

Ruhoy did not die on the operating table, but her tumor had grown so large it could not be entirely removed. Now, she has several smaller tumors that require radiation treatment. She said many of her female patients have had experiences similar to hers. “They’re not validated with regards to their concerns; they’re gaslit; they’re not understood,” she said. “They feel like no one is listening to them.”

Doubts about women’s pain can affect treatment for a wide range of health issues, including heart problems, stroke, reproductive health, chronic illnesses, adolescent pain and physical pain, among other things, studies show. Research also suggests that women are more sensitive to pain than men and are more likely to express it, so their pain is often seen as an overreaction rather than a reality, said Roger Fillingim, director of the Pain Research and Intervention Center of Excellence at the University of Florida. Fillingim, who co-wrote a review article on sex differences in pain, said there are many possible explanations, including hormones, genetics and even social factors such as gender roles. Regardless, he said, “you treat the pain that the patient has, not the pain that you think the patient should have.”

Women say reproductive health complaints are commonly ignored

Women often cite pain bias around areas of reproductive health, including endometriosis, labor pain and insertion of an intrauterine device, or IUD. When Molly Hill made an appointment at a Connecticut clinic in 2017 to get an IUD, she said she was warned it would be uncomfortable, but she was not prepared for “horrific” pain. Hill, now 27 and living in San Francisco, recalled that during the procedure, she began crying in pain and shouted at the doctor to stop. “We’re almost done,” she said the doctor told her and continued the procedure. “It was full-body, electrifying, knife-stabbing pain,” she said. After it was done, she said she lay sobbing on the table in physical and emotional pain. “It felt violating, too, to have that pain that deep in your core where you feel the most vulnerable.”

Studies consistently show that women who have not experienced vaginal birth have much higher pain during IUD insertion compared with women who have given birth. A Swedish study found that among 224 women who had not given birth, 89 percent reported moderate or severe pain. One in six of the women said the pain was severe. Although numbing agents and local anesthetics are available, they are rarely used.

In some cases, women have sued physicians for ignoring their pain. Dozens of women sued Yale University claiming that during an egg harvesting procedure at its infertility clinic, they were supposed to be receiving the powerful painkiller fentanyl. But some women were getting only diluted pain medication or none at all, according to lawsuits filed in the state Superior Court in Connecticut. Later, the clinic discovered a nurse had been stealing vials of fentanyl and replacing the painkiller with saline solution. The nurse pleaded guilty last year and was sentenced for tampering with the drugs. One of the plaintiffs, Laura Czar, wrote about her experience for Elle magazine, describing it as “a horrible, gut-wrenching pain,” and told a doctor at the time, “I can feel everything you’re doing.” Despite her protests, the doctor continued. Yale said in a statement that it “deeply regrets” the women’s distress and has “reviewed its procedures and made changes to further oversight of pain control and controlled substances.”

Racial disparities in pain management

For Sharee Turpin, the pain of sickle-cell disease sometimes feels like tiny knives slicing her open. Sickle cell disease is an inherited blood disorder that can cause suffering so severe, its attacks are called “pain crises.” But when Turpin, who is Black, experiences a pain crisis, the 34-year-old does not rush to the ER in Rochester, N.Y. Instead, she combs her hair, mists some perfume and slips on her “Sunday best” in hopes that the doctors and nurses won’t peg her as a drug seeker, she said. Sometimes, Turpin gets a care team that understands her pain. Other times, she is treated as a bother. “I’ve even been told ‘shut up’ by a nurse because I was screaming too loud while I was in pain,” she said.

Abundant research shows racial bias in pain treatment. A 2016 study found half of white medical students and residents held at least one false belief about biological differences between Blacks and Whites, and were more likely to underestimate Black patients’ pain. “The management of pain is one of the largest disparities that we see between Black people and White people in the American health-care system,” said Tina Sacks, an associate professor at the University of California at Berkeley and author of “Invisible Visits: Black Middle-Class Women in the American Healthcare System.”

Labeling women “hysterical” or blaming psychological causes

Research shows men in chronic pain tend to be regarded as “stoic” while women are more likely to be considered “emotional” and “hysterical” and accused of “fabricating the pain.” Carol Klay, a 68-year-old from Tampa, had endured years of chronic pain from arthritis, degenerative disk disease and spinal stenosis. During a hospital stay last year, her doctor noted in her medical record that she was crying “hysterically.” Klay said she was crying because she was unable to sit, stand or walk without agony, and the doctor had removed morphine from her cocktail of pain medications. She wonders whether the doctor “would have called me hysterical if I was a man,” she said. Tampa General Hospital said it could not discuss specific patients, but stated: “Patient treatment plans, including medication orders to reduce pain, are prescribed by multi-disciplinary clinical teams.” Research shows women’s physical pain is also often attributed to psychological causes.

Jan Maderios, a 72-year-old Air Force veteran from Chipley, Fla., said the trauma of having pain dismissed by doctors has stayed with her for years. She saw about a dozen doctors in the early 1970s for pelvic pain. When clinicians could not identify the cause of her pain, she was referred to a psychiatrist.

“You start to doubt yourself after so many medical experts tell you there’s nothing wrong with you,” she said. After a hysterectomy in 1976, Maderios learned that fibroid tumors in her uterus had been the source of her pain. She said learning her pain was real — and physical — “made all the difference in the world.”

Why women’s pain complaints often aren’t taken seriously

During a 33-hour labor with her first child in 2011, Anushay Hossain, 42, of D.C., opted for epidural pain relief but said she still felt it all — every contraction, every cramp and every dismissal of her pain by her medical team. The doctor reassured her that she was getting the maximum dosage of pain medication.

In fact, she wasn’t getting any at all. She said her epidural had slipped out. By the time the error was caught, she was shaking uncontrollably and in need of an emergency Caesarean section, she said. “There’s a pain gap, but there’s also a credibility gap,” said Hossain, author of “The Pain Gap: How Sexism and Racism in Healthcare Kill Women.” “Women are not believed about their bodies —period.”

This pain gap may stem, in part, from the fact that women have historically been excluded from medical research. It wasn’t until 2016 that the National Institutes of Health (NIH) required sex to be considered as a biological variable in most studies it funded. “We’re making progress,” said David Thomas, special adviser to the director of NIH’s Office of Research on Women’s Health. “But we do have a long way to go because there’s this whole institutional approach to doing research — pain and beyond — where it tends to be male-focused.”

Nearly 95 percent of U.S. medical school students said instruction on sex and gender differences in medicine should be included in curriculums, according to a 2015 survey. But only 43 percent said their curriculum had helped them understand those differences and only 34.5 percent said they felt prepared to manage them in a health-care setting.

“It is changing, but it’s changing very slowly,” said Janice Werbinski, immediate past president of the American Medical Women’s Association and chair of the mentorship committee of the association’s Sex and Gender Health Collaborative.

How women can advocate for better pain care

It took decades to solve the mystery of Maureen Woods’s chronic pain. Woods, 64, of Myersville, Md., started having joint pain in her teens and, over the years, told dozens of doctors her pain was “debilitating,” she said. Some told her it was all in her head. In 2017, she was diagnosed with hypermobile Ehlers-Danlos syndrome, a connective tissue disorder often causing loose joints, dislocations and chronic pain. She said women who are not being heard should keep advocating for themselves. “You have to go with your gut — something is wrong and I need to find a doctor who can figure it out,” she said. Marjorie Jenkins, dean of the University of South Carolina School of Medicine Greenville, urged women against feeling pressured to accept an “everything is normal” non-diagnosis. “If your provider does not appear to be listening to you or believing what you’re saying, then you need a new provider,” Jenkins said. “You are the client, you are the customer and you are the owner of your health.”

Women can also take a family member, friend or other support person who can corroborate their stories, said Alyson McGregor, an emergency medicine professor at the University of South Carolina School of Medicine Greenville and author of the book “Sex Matters: How Male-Centric Medicine Endangers Women’s Health and What We Can Do About It.” Particularly in emergency departments, she said, there can be an inherent bias. “There’s this assumption that women are emotional and they’re anxious and that that’s the main issue,” she said.

It’s wild to me that we don’t take women’s health care seriously. We should have better treatment for things like endometriosis and PCOS. I’m in the most excruciating pain, can barely walk and the most I get is an IUD (that is no longer working) thrown at me. But don’t worry, we have tons of cosmetic surgeries directed at women. Buccal fat removal, Brazilian butt lifts, face lifts, etc. All the medical research has gone into making women look more appealing to men and none of it is directed towards women’s health conditions.

"to endure!"

vincent van gogh ("trees and undergrowth") robert lowell [How will the heart endure?] vincent van gogh [I must endure bad times and the waters will rise, possibly as high as the lips and possibly even higher, how can I know beforehand? But I’ll fight my fight and sell my life dearly and try to win and pull through.] rainer maria rilke [To be loved means to be consumed. To love means to radiate with inexhaustible light. To be loved is to pass away, to love is to endure.] joan didion [Not just to endure it, not just to suffer it, not just to pass through it, but to live in it.] elena ferrante [maybe not even a very orderly mind can endure the discovery of not being loved.] elena ferrante [I will give what I can give, I will take what I can take, I will endure what has to be endured.] han kang [The feeling that she had never really lived in this world caught her by surprise. It was a fact. She had never lived. Even as a child, as far back as she could remember, she had done nothing but endure.] victor frankl [What is to give light must endure burning.]

– Audrey Hepburn

Joan Didion, from The Year of Magical Thinking

Story from the Washington Post here, non-paywall version here.

Washington Post stop blocking linksharing and shit challenge.

"The young woman was catatonic, stuck at the nurses’ station — unmoving, unblinking and unknowing of where or who she was.

Her name was April Burrell.

Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself.

April was diagnosed with a severe form of schizophrenia, an often devastating mental illness that affects approximately 1 percent of the global population and can drastically impair how patients behave and perceive reality.

“She was the first person I ever saw as a patient,” said Sander Markx, director of precision psychiatry at Columbia University, who was still a medical student in 2000 when he first encountered April. “She is, to this day, the sickest patient I’ve ever seen.” ...

It would be nearly two decades before their paths crossed again. But in 2018, another chance encounter led to several medical discoveries...

Markx and his colleagues discovered that although April’s illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain.

After months of targeted treatments [for lupus] — and more than two decades trapped in her mind — April woke up.

The awakening of April — and the successful treatment of other people with similar conditions — now stand to transform care for some of psychiatry’s sickest patients, many of whom are languishing in mental institutions.

Researchers working with the New York state mental health-care system have identified about 200 patients with autoimmune diseases, some institutionalized for years, who may be helped by the discovery.

And scientists around the world, including Germany and Britain, are conducting similar research, finding that underlying autoimmune and inflammatory processes may be more common in patients with a variety of psychiatric syndromes than previously believed.

Although the current research probably will help only a small subset of patients, the impact of the work is already beginning to reshape the practice of psychiatry and the way many cases of mental illness are diagnosed and treated.

“These are the forgotten souls,” said Markx. “We’re not just improving the lives of these people, but we’re bringing them back from a place that I didn’t think they could come back from.” ...

Waking up after two decades

The medical team set to work counteracting April’s rampaging immune system and started April on an intensive immunotherapy treatment for neuropsychiatric lupus...

The regimen is grueling, requiring a month-long break between each of the six rounds to allow the immune system to recover. But April started showing signs of improvement almost immediately...

A joyful reunion

“I’ve always wanted my sister to get back to who she was,” Guy Burrell said.

In 2020, April was deemed mentally competent to discharge herself from the psychiatric hospital where she had lived for nearly two decades, and she moved to a rehabilitation center...

Because of visiting restrictions related to covid, the family’s face-to-face reunion with April was delayed until last year. April’s brother, sister-in-law and their kids were finally able to visit her at a rehabilitation center, and the occasion was tearful and joyous.

“When she came in there, you would’ve thought she was a brand-new person,” Guy Burrell said. “She knew all of us, remembered different stuff from back when she was a child.” ...

The family felt as if they’d witnessed a miracle.

“She was hugging me, she was holding my hand,” Guy Burrell said. “You might as well have thrown a parade because we were so happy, because we hadn’t seen her like that in, like, forever.”

“It was like she came home,” Markx said. “We never thought that was possible.”

...After April’s unexpected recovery, the medical team put out an alert to the hospital system to identify any patients with antibody markers for autoimmune disease. A few months later, Anca Askanase, a rheumatologist and director of the Columbia Lupus Center,who had been on April’s treatment team, approached Markx. “I think we found our girl,” she said.

Bringing back Devine

When Devine Cruz was 9, she began to hear voices. At first, the voices fought with one another. But as she grew older, the voices would talk about her, [and over the years, things got worse].

For more than a decade, the young woman moved in and out of hospitals for treatment. Her symptoms included visual and auditory hallucinations, as well as delusions that prevented her from living a normal life.

Devine was eventually diagnosed with schizoaffective disorder, which can result in symptoms of both schizophrenia and bipolar disorder. She also was diagnosed with intellectual disability.

She was on a laundry list of drugs — two antipsychotic medications, lithium, clonazepam, Ativan and benztropine — that came with a litany of side effects but didn’t resolve all her symptoms...

She also had lupus, which she had been diagnosed with when she was about 14, although doctors had never made a connection between the disease and her mental health...

Last August, the medical team prescribed monthly immunosuppressive infusions of corticosteroids and chemotherapy drugs, a regime similar to what April had been given a few years prior. By October, there were already dramatic signs of improvement.

“She was like ‘Yeah, I gotta go,’” Markx said. “‘Like, I’ve been missing out.’”

After several treatments, Devine began developing awareness that the voices in her head were different from real voices, a sign that she was reconnecting with reality. She finished her sixth and final round of infusions in January.

In March, she was well enough to meet with a reporter. “I feel like I’m already better,” Devine said during a conversation in Markx’s office at the New York State Psychiatric Institute, where she was treated. “I feel myself being a person that I was supposed to be my whole entire life.” ...

Her recovery is remarkable for several reasons, her doctors said. The voices and visions have stopped. And she no longer meets the diagnostic criteria for either schizoaffective disorder or intellectual disability, Markx said...

Today, Devine lives with her mother and is leading a more active and engaged life. She helps her mother cook, goes to the grocery store and navigates public transportation to keep her appointments. She is even babysitting her siblings’ young children — listening to music, taking them to the park or watching “Frozen 2” — responsibilities her family never would have entrusted her with before her recovery.

Expanding the search for more patients

While it is likely that only a subset of people diagnosed with schizophrenia and psychotic disorders have an underlying autoimmune condition, Markx and other doctors believe there are probably many more patients whose psychiatric conditions are caused or exacerbated by autoimmune issues...

The cases of April and Devine also helped inspire the development of the SNF Center for Precision Psychiatry and Mental Health at Columbia, which was named for the Stavros Niarchos Foundation, which awarded it a $75 million grant in April. The goal of the center is to develop new treatments based on specific genetic and autoimmune causes of psychiatric illness, said Joseph Gogos, co-director of the SNF Center.

Markx said he has begun care and treatment on about 40 patients since the SNF Center opened. The SNF Center is working with the New York State Office of Mental Health, which oversees one of the largest public mental health systems in America, to conduct whole genome sequencing and autoimmunity screening on inpatients at long-term facilities.

For “the most disabled, the sickest of the sick, even if we can help just a small fraction of them, by doing these detailed analyses, that’s worth something,” said Thomas Smith, chief medical officer for the New York State Office of Mental Health. “You’re helping save someone’s life, get them out of the hospital, have them live in the community, go home.”

Discussions are underway to extend the search to the 20,000 outpatients in the New York state system as well. Serious psychiatric disorders, like schizophrenia, are more likely to be undertreated in underprivileged groups. And autoimmune disorders like lupus disproportionately affect women and people of color with more severity.

Changing psychiatric care

How many people ultimately will be helped by the research remains a subject of debate in the scientific community. But the research has spurred excitement about the potential to better understand what is going on in the brain during serious mental illness...

Emerging research has implicated inflammation and immunological dysfunction as potential players in a variety of neuropsychiatric conditions, including schizophrenia, depression and autism.

“It opens new treatment possibilities to patients that used to be treated very differently,” said Ludger Tebartz van Elst, a professor of psychiatry and psychotherapy at University Medical Clinic Freiburg in Germany.

In one study, published last year in Molecular Psychiatry, Tebartz van Elst and his colleagues identified 91 psychiatric patients with suspected autoimmune diseases, and reported that immunotherapies benefited the majority of them.

Belinda Lennox, head of the psychiatry department at the University of Oxford, is enrolling patients in clinical trials to test the effectiveness of immunotherapy for autoimmune psychosis patients.

As a result of the research, screenings for immunological markers in psychotic patients are already routine in Germany, where psychiatrists regularly collect samples from cerebrospinal fluid.

Markx is also doing similar screening with his patients. He believes highly sensitive and inexpensive blood tests to detect different antibodies should become part of the standard screening protocol for psychosis.

Also on the horizon: more targeted immunotherapy rather than current “sledgehammer approaches” that suppress the immune system on a broad level, said George Yancopoulos, the co-founder and president of the pharmaceutical company Regeneron.

“I think we’re at the dawn of a new era. This is just the beginning,” said Yancopoulos."

-via The Washington Post, June 1, 2023

fatima aamer bilal, from moony moonless sky’s ‘i am your mould, but the shape of you is true absence, leaving me purposeless.’

[text id: and is this not treason? / my soul belongs far more to you than it does to me.]

apple.news

The Crucial Decision That Can Protect Women’s Health as They Age — The Wall Street Journal

Removing ovaries with a hysterectomy might increase risk of heart disease, stroke and dementia

A 2013 study in the journal Obstetrics and Gynecology found that among more than 750,000 women, about 46% removed their ovaries at the time of hysterectomy whereas 54% didn’t. Even premenopausal women who preserve their ovaries during a hysterectomy are at increased risk of dementia and heart disease but less so, according to multiple studies.

The health risks associated with the removal of ovaries are significant.

Rocca was co-author of a 2021 Jama Network Open study that found that women under 46 who removed both of their ovaries with or without a hysterectomy had an increased risk of mild cognitive impairment and performed worse on cognitive tests 30 years later compared with women who didn’t undergo the procedure.

Another study Rocca co-wrote found that women who had ovaries removed before age 50 faced higher risks for several conditions years later, including heart disease and osteoporosis.

Other studies have linked the procedures to an increased risk of dementia, Parkinson’s disease and accelerated aging.

Partial quote. Just got this as a little news alert and it’s something I think about semi frequently because of my job. Really under discussed and kind of wild

ScienceAlert

Alzheimer's May Not Actually Be a Brain Disease, Expert Reveals

The pursuit of a cure for Alzheimer's disease is becoming an increasingly competitive and contentious quest with recent years witnessing sev

The pursuit of a cure for Alzheimer's disease is becoming an increasingly competitive and contentious quest with recent years witnessing several important controversies. In July 2022, Science magazine reported that a key 2006 research paper, published in the prestigious journal Nature, which identified a subtype of brain protein called beta-amyloid as the cause of Alzheimer's, may have been based on fabricated data. One year earlier, in June 2021, the US Food and Drug Administration had approved aducanumab, an antibody-targeting beta-amyloid, as a treatment for Alzheimer's, even though the data supporting its use were incomplete and contradictory.

Continue Reading.