Beyond a Viral Video: Building a Culture of Self-Advocacy in Medicine
TW: Medical trauma / mistreatment
When I went on the Made It Out podcast to talk about intuitive eating, diet culture, and fatphobia, I wasn't even planning to dive into medical advocacy. But we got into the conversation about refusal of care for fat patients, and I decided to mention a brief helpful tip to getting care - asking doctors to document in your chart if they ignore symptoms or refuse care (as very often happens to fat patients who are told to lose weight as a treatment for what turns out to be lung cancer).
The podcast creators decided to post that snippet, and the wildfire began. Suddenly, my words were catapulted into virality, and my notifications became a mix of heartfelt stories, passionate debates, and, yes, some hostility.
Let’s unpack this whirlwind.
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The Positives: Advocacy in Action
First, the overwhelming response from people who’ve struggled to get the care they need was deeply moving, and sometimes heartbreaking. I heard countless stories: patients reporting symptoms that spiraled into disasters, outright lies recorded in medical charts, and even people dying when legitimate concerns went into a void.
People also shared how similar methods have worked for them - adding things like having to look over a doctor's shoulder to see what they write, or emailing a follow-up through the patient portal as a secondary documentation. Some nurses even shared stories of advocating for patients when doctors didn't want to.
These stories underline a sad truth: many patients feel unheard in medical settings. My advice resonated because it handed people a tangible tool to reclaim some power in a system that often feels impenetrable.
The Backlash: A Medical Drama
Not everyone loved the advice. A small but vocal contingent of healthcare providers responded—some defensively, others with outright disdain. "Bullshit," one wrote. "[Patients] think they know more than the person who went to school and practiced for 20 years." Another admitted that they would just fire the patient, because they "know the lawsuit-happy ones."
While I’m empathetic to the challenges providers face, let’s be clear: advocating for yourself isn’t an attack on the medical profession or a ploy to get lawsuit money. It’s a response to a reality where people, especially women and marginalized groups, often have their concerns dismissed.
The Lessons Learned
Advocacy Works, Usually — Many people shared that simply asking for something to be documented shifted the tone of their appointments. Whether it’s because it highlights accountability or because it shows you’re informed, this strategy has power. However, it's important to recognize it could be a bigger uphill battle (being 'fired' as a patient, or having to take additional steps to access your own medical records).
Systemic Issues Exist — The stories people shared aren’t just anecdotes; they’re symptoms of a larger issue. Bias, overwork, and systemic inequities in healthcare leave patients feeling voiceless.
Pushback Can Be Informative — The defensive comments from some providers only reinforced the need for patient empowerment. If a simple request for documentation is met with hostility, it’s worth at the very least questioning why.
Engage With Care — We know all-too-well that some people take things too far and create distrust or exhaustion in healthcare providers (think Gypsy Rose as the most extreme), so it's important to be mindful of that. Providers must also deal with insurance companies - a burden we can all deeply understand - which is a huge factor in their decision-making. These are certainly not excuses, but it's nevertheless helpful to create common understanding.
More Tools for Healthcare Advocacy
Beyond the “document it” strategy, here are other ways to advocate for yourself in medical settings:
Bring a Buddy: Sometimes having a second set of ears can make all the difference. They can take notes, ask questions you might forget, and provide moral support.
Ask for Clarification: If something doesn’t sit right, ask: “How did you rule that out?” “Can you explain why this isn’t necessary?” or “What are the risks of not doing this test?” Pinpointing their reasoning can give you a better sense of when to push further.
Get a Second Opinion: It’s your health. If you’re not getting answers, don’t hesitate to see another provider (if this is an accessible option for you).
Check Your Records: Ask for a copy of your medical records, either immediately after a visit or periodically. Reviewing them can uncover errors or omissions that need correction.
Send a Follow-up: If there is a patient portal or office email, follow-up with them to review what happened in your visit and any symptoms you described that were ignored or dismissed.
Know Your Rights: Familiarize yourself with patient rights in your country or state. Many healthcare systems have policies that support second opinions, access to records, and more.
Wrapping It All Up
Virality is a strange beast. While it brought both cheerleaders and critics, it also sparked meaningful conversations about how we navigate our healthcare system. The stories people shared remind me why self-advocacy matters—because everyone deserves to feel heard, respected, and cared for. There were even doctors in the comments who were mortified to read these stories, and I personally know incredible doctors who share about treating patients who have been dismissed for ages.
And to the doctors who rolled their eyes at my advice: I’m not suggesting patients come into appointments with torches and pitchforks. This isn’t about mistrust; it’s about partnership. Because at the end of the day, the best healthcare happens when providers and patients work together.
