We Learned The Hard Way
The importance of self-advocacy while navigating healthcare
Story by Ella Gage
Illustrations by Grace Matson
Tears stream down my face onto my hospital gown, my right hand death-gripping my roommate’s while my left dangles over the side of the bed. A bumbling 60-something-year-old male nurse attempts and fails to jab an IV needle into my vein for the fifth time.
I am frozen, my vision blurring as I stare into the flickering fluorescent light above. But through my delirium, I knew exactly what was wrong — or at least, I had a viable theory.
“Appendicitis, maybe? Kidney stones?” emergency room doctors and nurses theorize as they inject me with two shots of God-knows-what, feed me mystery pills, and shove a cup of soupy, sickly-sweet “cocktail” of painkillers into my hand, instructing me to chug it. I’m immobilized, acute pain searing through my body. Nothing is working. This went on for 40 minutes.
“I think it’s my gallbladder,” I choke out. They don’t listen. I repeat myself, louder. They still don’t listen and continue spitballing theories.
Pain surges through my body. That day, it took doctors a remarkable 10 hours, a CT scan, MRI, ultrasound and X-ray to find my gallbladder swollen to an alarming 16 times its normal size, despite their initial certainty it was my appendix or kidney.
Now, how would I know it’s my gallbladder, much less have the misfortune of knowing what the tiny, irrelevant organ even is? While sprawled across the back seat of my roommate’s car, I feverishly scrolled WebMD. Trying to match symptoms to causes, I landed on a semi-common condition called cholecystitis.
To this day, I don’t believe the doctors would’ve known what was wrong with me had I not outright asked them to test for it.
It was sobering to learn that experiences like mine aren’t uncommon for women — or virtually anyone outside the cisgender male binary. Over the past two years, women were found to be 66.1% more likely than men to receive a misdiagnosis and 65.3% more likely to receive poor-quality healthcare, according to Soliant Health’s 2024 State of Healthcare Report. If you’re a person with a uterus in the 18 to 24-year-old age group, the risk of misdiagnosis jumps even higher.
“Women and minorities were only required to be included in medical studies as recently as 1993, so there's often not a lot of great data out there,” said Andrea Phillips, a nurse practitioner with a private practice in reproductive health and gender-affirming care, specializing in women’s chronic pelvic pain disorder and hormone therapy. “And when you're talking about the dissemination of medical research, it typically takes around 20 years for it to make its way into training programs that educate providers and change their mindsets.”
Medical negligence lawyer Claire Langford recently cited the gender gap in medical studies as a key cause of women’s misdiagnosis prevalence, listing a few more as well: “medical gaslighting,” social issues, and — an all-time classic — “perceived female hysteria.”
Plus, for over a century, medical textbooks have more or less only depicted diseases and conditions with illustrations of white men. So from med school onward, that’s the demographic doctors are the most confident diagnosing — hence why women and minorities are a staggering 20% to 30% more likely to receive a misdiagnosis, according to Dr. David Newman-Toker, lead author of a British Medical Journal study on diagnostic error.
In a National Institute of Health experiment on gender and racial disparities, 128 generalist physicians were asked to diagnose actors of all ages, genders and ethnicities, each pretending to have symptoms of coronary heart disease or depression. Physicians were the least certain in their diagnoses for Black and younger female patients with coronary heart disease. The more uncertain they were, the less likely they were to confidently treat the patients by ordering follow-up tests or prescribing medication, which explains the prevalence of misdiagnosis and inadequate treatment, specifically for young women and BIPOC individuals.
“There’s this historical ideology called Muscular Christianity. It has contributed to medical gaslighting we’re seeing in women’s health,” said Phillips. “It’s the theory that whatever’s happening in your body is a reflection of what’s happening in your mind,” she said.
According to Phillips, this is especially common with hormonal conditions like polycystic ovary syndrome (PCOS) — doctors push the blame onto the woman, that it’s their fault they can’t lose weight, their cholesterol is too high or they can’t relax their pelvic floor.
Additionally, according to Soliant Health’s 2024 State of Healthcare Report, 61.6% of 18 to 24-year-old patients are concerned about cost, turning to affordable clinics rather than sticking to one primary provider — think strip mall urgent cares, Planned Parenthood and college health centers, where smaller time slots and less specialized care are virtually guaranteed.
Financial barriers to specialized care, gender discrepancies in medical research and systemically overlooked symptoms coalesce to create the pandemic of misdiagnosis for college-aged women we’re seeing today.
“It’s so black-and-white when you’re interfacing with the medical field,” said Avery Colburn, a recent Western Washington University graduate. “Healthcare providers operate under the assumptions they’re given with your medical records, and that’s their entire frame of reference for how to interact with you,” she said.
Colburn was hit with a borderline personality disorder (BPD) diagnosis at 18 during what she recounts as the worst time of her life. She’d just gotten kicked out of her high school, had chaotic circumstances in her personal life and was preparing for a cross-country move from Arizona to Washington by herself.
“I didn’t know how to regulate my emotions at the time, and the doctors didn’t take the situational circumstances into account,” said Colburn. “They didn’t take me seriously due to my age and gender, and I had no idea how to advocate for myself, nor the long-term implications and stigma around that diagnosis,” she said.
After minoring in psychology, Colburn said she’s grateful to have developed a strong conviction about her own mental health as she works with her psychiatrist through the long-winded process of getting the BPD diagnosis taken off her record. Its stigma has adversely affected her ability to receive other medical treatments for her autoimmune disorder.
Two unnerving themes have resurfaced while discussing experiences navigating healthcare in college: (1) getting hit with life-altering, overly severe diagnoses, and (2) symptoms of severe medical conditions being downplayed as “normal.” For example, it took Laura Constantinescu, another recent Western graduate, over five years to receive a proper diagnosis for her severe migraines.
“I was nauseous, had a splitting headache, I couldn’t focus, my vision was blurring, and I was jumbling my words… I literally couldn’t speak English,” recounted Constantinescu. “When I was in eighth grade, I was told it was just anxiety and I should drink more water — seriously, water,” she said.
It wasn’t until she stumbled into the Western’s Student Health Center half-conscious that she finally got tested for migraines. Multiple doctors had previously brushed off her symptoms as “normal anxiety,” throwing multiple anxiety medications at her to try. None of them worked.
One in five women are prescribed antidepressants due to doctors “overlooking the root cause of their condition,” according to Langford’s medical negligence law firm’s survey of 500 women who have been incorrectly diagnosed. Assumed “female hysteria” strikes again.
“I trusted doctors too much,” said Colburn woefully. At 19, she’d been incorrectly medicated for a hormonal condition, causing her to become permanently immunodeficient. “It made me realize putting my health solely in the hands of medical professionals was almost negligent,” she said.
There are several reasons for the pandemic of misdiagnosis and poor quality treatment that disproportionately affects women — especially young women. From a medical standpoint, there is a nationwide doctor shortage that’s “almost at crisis level,” according to the president of the American Medical Association, Dr. Bruce Scott. Overrun, understaffed primary care providers and clinics pass patients around between practitioners. Diagnostic issues often occur when critical information about a patient’s history is fragmented among providers, according to a 2015 study by the National Institute of Health.
“The shitty reality of it is that you have to speak up, you have to do your research, you have to be confrontational during appointments,” said Constantinescu. “Doctors won’t hear you out and you won’t get the right treatment otherwise,” she said.
Phillips agrees that — unfortunately — the responsibility falls on the patient to prepare beforehand.
“Some medical providers aren’t actively working to decrease health disparities, so part of the solution is people advocating for themselves during visits and demanding more of their providers,” said Phillips. “But it can also be really hard to advocate for yourself when you’re young, navigating the complexities of healthcare and don't feel particularly powerful or like you can be taken seriously.”
As an independent practitioner, Phillips recommends two key tools for self-advocacy. First, be very clear: tell the medical provider that you’re requesting a test for a specific reason, and if they say no, ask them to document that they’re refusing to order a test for your symptoms in their notes. Be really clear on your symptoms to your medical provider. She says it would take them just as long to type up the note as it would to order follow-up tests.
Also, if you suspect you have a certain health condition, she recommends looking up the exact diagnostic criteria pre-visit. All you have to do is Google the diagnostic checklist and skim the bullet-point symptom list to see if anything lines up. If even some of your symptoms do, screenshot the list and show it to your provider during your visit to back up your self-diagnosis.
Diagnosis and treatment are a guessing game in any medical setting. Galvanize the odds in your favor — do your research ahead of time, speak up when things don’t sound right, get second opinions, and, most importantly, trust your body and mind. Whether it be physical or mental, there is a deep gender discrepancy in medical mistakes, and young women are heavily affected by it.
It took me nearly four years, three misdiagnoses, stress, confusion and frustration to learn that the hard way — so hopefully you don’t have to. You are your own best advocate.