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136: Why telling women to 'talk to their doctor' or 'advocate for themselves' is not that simple

This piece cuts through a pervasive medical myth: that women simply need to speak up louder to get better care. Two Truths argues that the constant advice to "advocate for yourself" is not just unhelpful, but often impossible within a system designed to ignore female biology and dismiss pain. The report brings hard data to an emotional frustration, revealing that only 8.8% of National Institutes of Health spending in the last decade has targeted women's health.

The Myth of Self-Advocacy

The editors frame self-advocacy not as a superpower patients should cultivate, but as a necessary defense mechanism against a broken infrastructure. They note that while the advice to "talk to your doctor" sounds innocuous, it ignores the reality that many providers lack training in conditions specific to women. The piece reports, "Ideally, when patients are interacting with the healthcare system, it should be a system that is already ready and designed to do the best for you." This reframing shifts the burden of failure from the individual patient back onto the institutions that prioritize insurance reimbursements over optimal care.

136: Why telling women to 'talk to their doctor' or 'advocate for themselves' is not that simple

The historical context provided is stark. Medicine has long relied on data from predominantly white men, leading to dangerous diagnostic gaps. Two Truths highlights that it takes an average of five years to diagnose endometriosis and notes a critical blind spot in cardiology: "For a long time, researchers didn't really think it was possible to have a heart attack without clogged arteries... women with chest pain and clean scans could have been told they were fine and been discharged from hospitals when, indeed, they were having a heart attack." This evidence is compelling because it moves beyond anecdotal complaints to demonstrate systemic negligence that literally kills.

"Self-advocacy is a tool you deserve to have—not a burden you should be forced to carry."

Critics might argue that in the absence of perfect systems, individual agency remains the only immediate path to safety for patients. However, the article counters this by pointing out that the ability to advocate is deeply unequal. As Dr. Navya Mysore explains, "This includes Black and Native American women in maternal health, women with disabilities, LGBTQ+ patients... These disparities in outcomes... reflect structural inequities and bias in the system, not individual shortcomings." The piece effectively dismantles the idea that a lack of advocacy is a personal failing.

From Individual Action to Systemic Reform

The commentary then pivots from diagnosing the problem to exploring solutions, distinguishing between what patients can do now and what must change structurally. While offering practical tools like preparing lists of questions or seeking second opinions, the editors emphasize that these are stopgaps. "Ultimately, the goal isn't to get better at fighting to be heard, it's building a healthcare system where being listened to... is the default—not something that has to be earned through persistence," says Dr. Mysore.

The report also touches on the regulatory vacuum in the supplement industry, noting that federal oversight hasn't been meaningfully updated since 1994. It details how advocates are pushing for clear definitions of "clinically studied" and enforceable limits on heavy metals, specifically for pregnant women and children. This section broadens the scope from clinical interactions to legislative action, suggesting that true self-advocacy involves engaging with policy, not just doctors.

A counterargument worth considering is whether focusing on system-level reform delays immediate relief for patients currently in pain. The piece acknowledges this tension but insists that without top-down change, individual efforts will always be insufficient. As Dr. Morgan Edwards-Fligner notes, "We can't expect to see a lot of the big-scale changes that we need for women's health to improve on a population level without having changes to the systems."

Bottom Line

Two Truths delivers a powerful critique by exposing self-advocacy as a symptom of systemic failure rather than a solution. Its strongest asset is the integration of hard data regarding research funding gaps with the visceral reality of misdiagnosis, proving that the problem is structural, not behavioral. The piece's vulnerability lies in its reliance on future policy changes to solve immediate crises, but it wisely refuses to let readers believe they can simply "fight harder" their way out of a broken system.

Deep Dives

Explore these related deep dives:

  • Gas Light Amazon · Better World Books by Patrick Hamilton

  • Inclusion and exclusion criteria

    This article details the specific FDA policy changes and historical biases that led to decades of medical data being skewed toward male physiology, directly explaining why the author argues patients must 'advocate' for care based on incomplete evidence.

  • Gaslighting

    While the article discusses the frustration of not being heard, this specific sociological and medical concept defines the systematic dismissal of women's symptoms as psychological or exaggerated, providing the technical vocabulary for the 'fight' described in the text.

  • Yentl syndrome

    This obscure medical term describes the phenomenon where women are only diagnosed with heart disease after exhibiting male-specific symptoms, serving as a concrete historical example of why the author claims the system is not 'ideally' designed for female patients.

Sources

136: Why telling women to 'talk to their doctor' or 'advocate for themselves' is not that simple

by Various · Two Truths · Read full article

Welcome to Two Truths—a best-selling newsletter by health journalist Cassie Shortsleeve and Motherspeak creator Kelsey Haywood Lucas. Two Truths explores the many facets of maternal health and living well in today’s world. It’s been named a “best parenting Substack” by Motherly, recommended by The Skimm, and featured in Today, Fast Company, The Bump & more.

Support journalism that supports motherhood! Your paid subscription (less than $5/month) directly fuels this newsletter and our maternal health reporting.

Today’s letter is reported by Cassie Shortsleeve and brought to you by Ritual—a female-founded traceable supplement company—through the Two Truths x Ritual Reporting Grant, which helps fund and unlock our original health reporting for all readers.

I’ve been covering women’s health for more than a decade. More often than not, articles on women’s health include careful caveats for a female reader—things like, “Always talk to your doctor,” or “Be sure to advocate for yourself.”

While seemingly innocuous on the surface, both pieces of advice have always bothered me, deserving of dissertations of their own. But what if your doctor doesn’t know the answer or hasn’t been able to help with an ongoing problem or symptoms (often through no fault of their own, but rather a medical system that doesn’t always prioritize providers or patients)? What if you’ve tried to talk to your doctor and can’t get through? And also: Why should I have to advocate for the basic care I need and deserve? And what if I don’t know how? What if I can’t?

These are big questions with complicated answers—all rooted in persistent gaps in women’s health research and healthcare, top of mind this week as Melinda French Gates pledged an additional $215 million to fund women’s health, including investments in The Menopause Society.

Today, we’re digging into self-advocacy—what it is, why it matters, and why you shouldn’t have to fight for it in the first place.

So what is self-advocacy?.

Self-advocacy is the act of representing yourself; in medicine, it’s often a way to actively participate in decision-making about your healthcare or medical treatment. Ideally, we wouldn’t have to do it.

“Ideally, when patients are interacting with the healthcare system, it should be a system that is already ready and designed to do the best for you,” says Onouwem Nseyo, M.D., an OB/GYN at Sutter Health and host of the Golden Hour podcast. But healthcare systems are large and fractured and too often prioritize ...