Jan 23, 2024 Sarah duRivage-Jacobs 10 min
When Apple Podcasts suggested I listen to “The Retrievals” — a podcast that needs a trigger warning for anyone who has experienced medical trauma or experienced gaslighting by their healthcare providers — I hesitated because I knew it might hit too close to home. Unable to resist the allure of a good story, I eventually hit “play” on the first episode. It wasn’t long before I was holding back tears (or openly crying) as women discussed their unnecessary and excruciating experiences of pain during their elective egg retrieval procedures at a Yale fertility clinic.
Their stories of lying on an exam table, crying in pain while trying to convince a doctor that a gynecologic procedure hurt more than it was “supposed to” were all too familiar. I, too, have spent countless hours of my life in exam rooms pointing to unacceptably high pain scale numbers, and watching the skeptical expressions form on the faces of nurses and doctors while being told that I was “sensitive,” “anxious,” “depressed,” or “a drug seeker.” I, too, have even been accused of lying because if I was “actually in that much pain” I wouldn’t be able to sit up or have a conversation.
Experiences like these are frustrating, unacceptable, and unfortunately common for those assigned female at birth (AFAB). You don’t have to look far beyond my experience, or beyond the experiences of the women in “The Retrievals,” to find countless other stories, popular media articles, or even medical studies that show AFAB people’s pain is both perceived and treated differently.
If this has happened to you before and you’re worried it might happen again, it’s important to know that there are steps you can take to advocate for your pain. Read on to learn more.
The disparities start as soon as AFAB people report pain to their doctors. Health Communication published one study in which 36 women were interviewed about their experiences of reporting pain to medical professionals. Every single participant had an experience of at least one medical provider ignoring, dismissing, or minimizing their pain and other symptoms. They said medical providers blamed their pain on stress or mental illness instead of investigating a physical cause, questioned whether they were exaggerating, and, in more than one case, told them their symptoms were their own fault because of their lifestyle.
Medical professionals are more likely to attribute AFAB people’s pain to mental illness or assume that they’re being “emotional,” “hysterical,” or just “complaining."
A meta-analysis of 77 studies that examined how medical professionals view AFAB people’s pain published in Pain Research and Management revealed that medical professionals tend to view AFAB people as more “sensitive” than people assigned male at birth (AMAB). They tend to assume AFAB people are exaggerating. The same meta-analysis also found that medical professionals are more likely to attribute AFAB people’s pain to mental illness or assume that they’re being “emotional,” “hysterical,” or just “complaining,” revealing implicit biases that can be harmful.
Medical providers’ dismissal of AFAB people’s pain becomes even more apparent when that pain is related to sexual and reproductive health. A study published in the Journal of Endometriosis and Pelvic Pain Disorders found that 28% of the women who participated in the study talked to their doctor about severe pelvic pain more than 20 times before receiving an endometriosis diagnosis. About 24% of them weren’t diagnosed with endometriosis until 11 years after they first discussed their symptoms with their doctors. Nearly half of these women received a diagnosis of anxiety or depression before they were finally diagnosed with endometriosis, and more than half of these women said that they were in pain every single day while they saw doctor after doctor who dismissed their pain.
In a 2020 article about Long Covid published in The Journal of the American Medical Association, a Long Covid patient named Hanna Lockman used the term “medical gaslighting" to describe how medical professionals refused to take people seeking medical treatment for post-Covid symptoms seriously. “We’ve experienced so much medical gaslighting,” said Lockman, “Basically doctors telling us, ‘That’s not what you have. It’s just anxiety.’”
Though the term “medical gaslighting” was new to the general public, it wasn’t new in chronic illness communities, and neither was the phenomenon it describes. People with chronic reproductive diseases, chronic Lyme disease, chronic fatigue syndrome, fibromyalgia, lupus, and other chronic conditions have long described their experiences with dismissive and invalidating medical professionals as gaslighting.
Medical gaslighting can take several forms — it may look like medical professionals suggesting that you’re “sensitive” or accusing you of “exaggerating the severity of your symptoms.” It can also look like medical professionals insisting that you’re “not really sick,” that your symptoms are “all in your head,” or diagnosing you with depression, anxiety, or panic attacks instead of looking for a physical cause of your symptoms.
Depending on your symptoms, medical gaslighting can also involve medical professionals telling you that your symptoms are “normal.” This is all too common for people experiencing chronic pelvic pain and/or excruciating menstruation.
I spent 13 years myself, trying to work my way out from under medical gaslighting. In my heart, I always knew that my pain and symptoms were real, but after years of being told that they weren’t, I started to wonder if I really was sensitive, exaggerating, or just plain crazy. Medical gaslighting was my norm until I started to push back.
It’s easy to label the doctors who ignore, dismiss, or downplay your pain as the real villains straight out of a Grimm Brothers fairy tale. I’ve certainly felt this way more times than I can count. But the real issues lie within the larger medical system, sex and gender biases in research and medical education, and suboptimal, misinformed diagnosis and treatment options — it’s more of a system issue, and less of an individual problem.
At the base of it, sex and gender medical education is significantly lacking, and that is mirrored in sex-biased research. One survey asked the leading medical schools in the United States and Canada about their sex and gender education, and for those that answered, found that 70% of the responding schools did not have a sex- and gender-specific medical curriculum. And while the large majority of medical students feel that incorporating sex- and gender-specific education would improve their patient management abilities, this gap in education may be driving stronger social biases. And despite legislation and social efforts to reduce sex-biases in scientific research, the biases continue in the majority of research studies.
Beyond the gaps in research and formal education, the way medical professionals are trained is also a major systemic contributing factor, invalidating encounters with patients. One of the most common aphorisms in medical training is “When you hear hoofbeats, think horses, not zebras.” The phrase illustrates the idea that medical professionals are trained to look for the simplest explanation rather than digging deeper and running a bunch of tests. The majority of the time, the most common diagnosis is the correct diagnosis. However, medical providers’ tendency to look for horses, not zebras, can lead them to prematurely decide on a diagnosis and dismiss further discussion. And in a healthcare system that’s counting every penny, test, and minute spent with a patient, many providers aren’t incentivized to dig deeper. They’re incentivized to diagnose as quickly as possible, with as few tests as possible, and discharge as many patients as they can.
Even the best doctor in the world can’t know what their patients are actually feeling.
Perhaps one of the trickiest roadblocks, Dr. Karen Sibert asserts in an article for The Conversation, is the fact that pain is tough to assess and treat. Even the best doctor in the world can’t know what their patients are actually feeling. What one person reports as “the worst pain I’ve ever felt” could be another person’s “it hurts, but it’s not limiting my daily life.” So, when you’re describing your pain to your medical providers, they have to make a lot of assumptions based on implicit biases. These assumptions all play into how medical providers interpret what you’re saying about your pain, even if they’re unaware of their own assumptions.
This murky path to objectively measuring a person’s pain is only further complicated by the opioid crisis. The way medical providers assess and treat pain has also changed dramatically since the late 90s and early 2000s, when doctors around the country were given the false information that OxyContin was less addictive than other opioid pain medications and could be prescribed for everyday pain relief as well as chronic pain. This resulted in an explosion in the number of Oxy prescriptions and consequently, the beginning of the opioid epidemic. Over two decades later, the devastating consequences have made medical providers wary of patients’ reports of pain. Though it would be an unfair overstatement to say that doctors assume anyone reporting pain is “drug-seeking,” the unfortunate reality is that those with legitimate pain often get dismissed because of doctors’ understandable fear of improperly treating pain.
Then there’s the myriad systemic issues that make it difficult for medical professionals to provide comprehensive and compassionate care, like the industry-wide shift away from patient-centered care, and specifically, the lack of in-depth conversations with patients. In an article published in the Journal of General Internal Medicine, Drs. Shravani Durbhakula and Auguste H. Fortin described the myriad systemic issues that prevent doctors from prioritizing their patients including policies that limit the time doctors can spend with each patient, documentation requirements for each encounter, time spent navigating insurance requirements, and incentives that encourage medical professionals to see more patients rather than spend quality time with each patient.
So, instead of deciding doctors are villains, we have to acknowledge what they’re up against and figure out how to talk to them so our voices are heard.
Unfortunately, most of us freeze in that crucial moment when we’re feeling dismissed, unheard, or even gaslit by a medical provider. Though this is totally normal and understandable given how upsetting it is to be treated this way, it prevents us from advocating for ourselves. To prevent this shutdown, you’ll need to go into each medical appointment with a strategy aimed at getting your doctor to actively listen and take you seriously, professional Health Advocate Tammy Porter told Prevention.
Here are Porter's tips to try:
What if you do all that and you still don’t feel like you are being heard? First, take a deep breath. Center yourself before you respond emotionally. Then, follow these tips which doctors themselves gave to Today.com:
If you are still left feeling in self-doubt, or confused about your experience, ask the physician to explain why they believe nothing’s wrong or that your symptoms are psychological. Ask them if there are any medical conditions that could be causing your symptoms, and ask them to explain, in detail, why they don’t think you have any of those conditions.
If they do suggest some medical conditions that fit your symptoms, request to be evaluated for those conditions. Be firm, but not defensive or combative. If you continue to feel invalidated, it’s ok to let them know that you’ll be seeing another doctor. Don’t waste your time with a doctor who isn’t willing to take you seriously.
In an ideal world, all doctors would listen attentively, take us seriously, and validate our concerns, but we don’t live in an ideal world. So, you’ll need to advocate for yourself when you feel dismissed, unheard, invalidated, or gaslit. It can be hard and intimidating, but it’s worth it.
Eventually, I found a full team of affirming, validating medical providers who listen, believe me, and do the work to find out what’s wrong with me.
After years of medical gaslighting, I started using similar tactics to these, and I fired every doctor who pushed back. Eventually, I found a full team of affirming, validating medical providers who listen, believe me, and do the work to find out what’s wrong with me. They landed on two diagnoses that fit all my symptoms, developed a comprehensive treatment plan with my input, and helped me get the treatments I needed.
Today, I’m mostly pain and symptom-free, though the chronic nature of my diagnosis means that flares still happen. But when they do, I have a team behind me that can help me out. You deserve that too, and you can have it.