The Pain Gap
Warning: this newsletter will make you want to break things
Good morning, readers 👋🏻
Today’s newsletter is heavy and may be triggering for folks. If you’ve experienced medical racism or sexism, had a traumatic experience with child birth or another medical procedure, this newsletter may be difficult to read. If you choose to skip it, I understand and I’ll see you next week.
Women have many experiences that unite us. The pain gap is one of the experiences I wish we didn’t have in common.
Before we start on the meat of today’s newsletter, I have permission from my sister to share her own pain gap story. First, pause for this adorable picture of us as little tots. A tiny poodle (her) and beanie (me).
A few years ago, my sister was experiencing debilitating stomach pains. She said to clarify that debilitating for her was “crippling pain, curled up on the bathroom floor dizzy from pain, throwing up kind of pain.” The worst part? The pain was totally unpredictable. She’d be on the subway on the way to work or out to dinner with friends and suddenly experience searing pain and have to drop everything to get home as quickly as possible. Her initial diagnosis at the doctor? ANXIETY.
Admittedly, my sister is anxious. Aren’t we all in this day and age? But, if you have anxiety, you very clearly know the difference between “my tummy hurts because I’m feeling anxious” versus “I feel like I’m being stabbed repeatedly in the stomach.” She was bounced around to several different doctors for over a year. Finally, she went back to her initial doctor with a clear list of symptoms and determined to advocate for herself, because this definitely wasn’t anxiety. This time the doctor said “oh, you have a textbook case of gallstones, we need to take your gall bladder out.” My sister is now living gall bladder and pain free!
The point of this story is if any of the doctors she saw had listened to her and not stereotyped her based on her gender, ethnicity, and medical history, they wouldn’t have continually misdiagnosed her while she lived in fear of crippling pain.
And this, my friends, is the pain gap.
The Pain Gap
Before we start, I want to flag I am just scratching the surface of this phenomenon in today’s newsletter. There’s so much to discuss, Anushay Hossain literally wrote an entire book on the topic and now has a podcast. So bare with me as I may leave things out, not because they aren’t important, but because I am one person writing this newsletter in my free time and doing her best.
The pain gap is a term used (coined?) by author, women’s health advocate, and podcast host Anushay Hossain. The pain gap is a catch-all term for the systemic disparities women face in our healthcare system because of sexism and racism. It refers to doctors not taking women’s pain seriously, a lack of medical studies related to women’s specific medical issues, and the constant misdiagnosis and dismissal women face in healthcare settings.
I can feel every woman reading this newsletter vigorously nodding their head as they remember a time when this happened to them. Probably more than once. One time a doctor told me I had PCOS because I have a mustache. Baby girl, I am simply Italian and a mammal.
When You Don’t Believe Women, They (Often) Die
The maternal mortality rate in the United States is abysmal. For those not in the know, maternal mortality = the death of a woman during pregnancy, child birth, or within 42 days after the end of the pregnancy. The United States has one of the highest rates of maternal deaths among high-income countries… and over 80 percent of those deaths are PREVENTABLE. This exact phenomenon is why Anushay Hossain wrote “The Pain Gap,” as she almost died in child birth.
Black women have the highest maternal mortality rates within the United States, as they are impacted by BOTH racism and sexism in the healthcare system. Hossain’s book details several accounts of Black women who had textbook red flag symptoms during pregnancy, during labor, or after giving birth, and they were told it was nothing. Imagine being told that GUSHING BLOOD after child birth or having major blood pressure changes during pregnancy are normal?? In what world?? While some survived to tell their stories, the majority featured in the book died due to the racist biases in our healthcare system.
And the data for maternal mortality is about to get a lot worse + harder to access as states like Georgia and Texas stop collecting and publicizing the data. Why? Because they have some of the highest maternal mortality rates in the United States and they don’t want to admit abortion bans are partially the cause.
There’s so many other ways women die, or are in constant severe pain, due to biases in our medical system. Did anyone listen to the New York Times podcast “The Retrievals?” Well, spoiler alert if you haven’t already listened. The podcast covers the experiences of hundreds of women who went in for an egg retrieval AND WERE NOT GIVEN PAIN MEDICATION. Now, the doctors and nurses thought they had given the patients pain medication, but it turns out it had been swapped out by a nurse who was stealing the opioids and replacing the fentanyl with saline.
During procedures, the female patients were saying “hey, this is REALLY hurting” or “I can literally feel you scraping my eggs out of my body” or screaming during the procedure, and the doctor’s just told them they were being overly sensitive and some pain/pressure is normal. Even during follow-up calls and appointments, the doctors continued to dismiss the women’s questions and pain. The Retrievals is back for Season 2, which focuses on women feeling absolutely everything (like their ORGANS BEING MOVED AROUND) during their C-sections.
Why aren’t women believed when we are in pain? The reasoning is a parade of horribles. One of the (many) reasons is existing biases in medical school training and our healthcare system often attribute women to having a lower tolerance for pain (weaker than men bias) or experiencing pain “in their heads.” The word hysteria is literally derived from the Greek word for “uterus.” 🙃 That’s a fun fact I have whipped out on a first date, I was not asked for a second.
In a study of women and men with severe stomach pains, women patients waited 33% longer to be seen than male patients with the same symptoms. Women and people of color are 20-30% more likely to experience misdiagnosis, which can lead to permanent disability or death. For example, women are 50% more likely than men to be misdiagnosed as having a heart attack when they actually have a cardiovascular disease.
“We should also keep in mind that while some gaslighting is done consciously, a lot of it happens unconsciously, too. A triage nurse may not deliberately tell a woman who comes to the ER complaining of chest pain that it’s all in her head, but she may notice that she’s very anxious and subconsciously make that assumption. That’s what makes this so hard to address.” -Dr. Jennifer Mieres, Northwell Health, expert in cardiovascular disease (see interview)
This negative impact is often multiplied for women of color. Doctors are less likely to prescribe pain medication, especially opioids, to Black patients. Additionally, many medical biases in medical training lead doctors and other medical staff to believe falsehoods about Black patients bodies. 🤬 Latina and latino patients also experience medical racism at higher rates due to language barriers (doctors not properly explaining treatment or symptoms because the patient doesn’t speak English) or doctors seeing Black or Latina/Latino patients as “aggressive” when they advocate for themselves.
There’s so many other pain gaps women experience… endometriosis, menstrual pain, sickle cell, chronic pain, cardiovascular issues, pelvic floor, menopause, fibroids, and the list goes on… I know we have all seen those videos of men having a menstrual cramp or contraction simulator put on and writhing in pain while women sit there unfazed and say “yep, that’s a normal period for me.”
💉 Where Are Women in Clinical Trials? 💉
There’s a basic scientific principle you learn when you are making your volcano science project in the 5th grade. If you’re only testing one type of subject, you can’t make a conclusion for multiple types of subjects based on that experiment. You would think that would translate later on… if you are only or primarily testing drugs on men, you have little to no idea how those same drugs will effect women. Although women and men are both humans, are bodies are made up completely differently. Different hormones, muscle mass, metabolic enzymes, I could go on!
In 1977, the Food and Drug Administration (FDA) released a policy recommending drug trials EXCLUDE women of child bearing age from certain stages of drug trials. Ironically, they recommended this because of the horrible effects of thalidomide (a medication used for morning sickness), which caused severe birth defects. If you’ve seen Call the Midwife, you’ve got the idea. Thalidomide did not go through the appropriate rigorous testing, but they decided, what the heck, let’s give this to a bunch of pregnant women! And then as a result of that said “oh actually, let’s not test drugs on women AT ALL!”
It turns out, purposefully excluding women from clinical trials has some negative effects because there’s no data on how the drugs you’re testing impact women! For example, in the 1980s women were excluded from HIV drug trials. How the actual fuck are we supposed to know if HIV drugs are working on women if you don’t test them on women?! 🤬
Although the policy recommending women’s exclusion from drug trials was overturned years later, the impacts still are seen today. In 2021, over 80% of preclinical studies assessing drug safety and PG effects are still conducted solely in male mice and as few as 22% of phase I clinical trial participants are female. Women were underrepresented when performing clinical trials for antiviral treatments to treat people with COVID-19.
There’s many reasons this type of exclusion still occurs. For one, science and medicine remain male-dominated fields. You can’t be what you can’t see! Having a woman doctor or researcher on the research team increases the likelihood of focusing on (or at least not excluding) women’s health.
Thanks For Depressing Me!! What The Heck Do We Do About This?
👩🏽🔬 Study women! We study women’s health issues WAY less than men’s. We are more likely to study women’s health issues if a woman scientist or researcher is on the team, so this means we need more women in STEM!! It also means we need to require male scientists and researchers study these things! Where the heck is my pill to banish my period symptoms? You have a plethora of drugs for erectile dysfunction, go make some discoveries about PMS!
📚 Better education! Realistically, how many people reading this newsletter who have not already undergone menopause know the symptoms of menopause outside of hot flashes? How many know how heart attack symptoms differ for women and men? How many know what the symptoms for endometriosis are? We need to normalize educating EVERYONE on women’s specific health issues and symptoms. Better education = better patient advocacy = better care.
💰 Show me the money! Don’t even get me started on the lack of funding for women’s health issues. In 2020, only 5% of global research and development funding was dedicated to women’s health research. How the heck are we supposed to understand, diagnose, create medicine and treat women when we don’t study their diseases and illness?!
Alright, longest newsletter rant ever written is now over! I hope you all learned something today, or maybe you realized something that happened to you at the doctor’s office wasn’t quite right. If you have your own pain gap experience you’d feel comfortable sharing, the comments and my email are open. Sometimes we find strength and closure in solidarity and knowing we aren’t alone. ❤️
Citation
https://orwh.od.nih.gov/toolkit/recruitment/history
https://www.sciencepharma.com/blog/women-in-clinical-trials/
https://www.library.hbs.edu/working-knowledge/lack-of-female-scientists-means-fewer-medical-treatments-for-women
https://www.commonwealthfund.org/publications/issue-briefs/2024/jun/insights-us-maternal-mortality-crisis-international-comparison
https://pmc.ncbi.nlm.nih.gov/articles/PMC12094398/
https://www.nytimes.com/2023/06/29/insider/the-reverberations-of-pain-and-its-dismissal.html
Important to note that the only reason the US didn't have issues with birth defects from thalidomide was because one woman at the FDA wouldn't approve it for lack of evidence of efficacy, despite pressure from her superiors.
https://www.fda.gov/about-fda/fda-history-exhibits/frances-oldham-kelsey-medical-reviewer-famous-averting-public-health-tragedy
Having just had all my reproductive bits removed a few months ago, I can confirm that there are so many things that doctors don't tell you but should. And, having also talked to a lot of other women in my situation, it's clear that much pain and confusion happens because of medical silence or bias. Fun times!!