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If you’re a woman, you’ve almost certainly felt unheard or invalidated when expressing a medical concern. Chances are, you’ve left a medical appointment with more questions than answers. You’ve felt rushed and dismissed and just so incredibly confused when attempting to seek clarity on what’s happening in your own body. And you’ve done that thing that every single one of us has done: You’ve taken those questions to the internet.
As a health journalist, I’m really not a fan of medical misinformation. I find myself bristling when someone mentions “doing their own research” about health matters, because I understand what research truly is, and how much professional skill is required in order to do it properly. I find online wellness culture to be an unmitigated mess, full of conflicting messages, extreme takes, and straight up scams. And I truly believe this culture of digital misinformation is contributing to a health crisis of its own.
But I’m also a woman, a person who has felt completely invisible and unheard by the medical community — and I’ve absolutely fallen into this trap myself.
I’ve felt invalidated at the hands of the medical system so many times.
When struggling to get pregnant, when trying to address my frequent migraines, when attempting to get earlier breast cancer screenings due to risk factors, to name a few examples. Most recently, I developed a dermatological issue. Now, six months into the incredibly frustrating experience of having red, itchy, inflamed, flaky skin, I’m still swirling in a cycle of confusion and frustration. I have so many questions about my symptoms, about potential lifestyle modifications, about the side effects of medications I’ve been prescribed, and more.
Yet I have no outlet for those questions. Recently, I called my doctor’s office to report that the previous prescription I tried had not worked. Instead of allowing me to schedule another appointment, they simply prescribed another drug — one that came with a warning that it may increase my long-term risk of cancer. I tried again to have a simple conversation with a provider in the office and was shot down again.
So I did the only thing I could think of: online digging.
And of course, I found myself going down multiple rabbit holes. I read testimonials from people who had used the drug — some of whom had absolute horror stories to share. And as I began digesting these stories, I found myself with even more questions and confusion…and I channeled that into even more digging.
I see why people fall into the trap of medical misinformation, even though I also see that it’s just that — a trap.
Professionally, I spend a lot of time thinking about cutting through all that noise. I know that providing people with accurate, vetted information about health can be truly life-saving.
But I also see that sometimes, patients feel like they have no choice but to take things into their own hands. The truth is, there are credible sources online. There’s also value in listening to real people when they share their anecdotal experiences with conditions or drugs — because sometimes, data is lagging, and we simply don’t have the scientific-backed answers (especially in the world of women’s health, which is notoriously under researched). Sometimes, medical professionals don’t have the time or bandwidth to walk you through all the options or possibilities. Sometimes, bodies react to things in completely unexpected ways. And sometimes, community can be an incredible resource.
Take, for example, Olivia Culpo’s story about finally securing an endometriosis diagnosis. In an Instagram post, the model revealed that after years of debilitating symptoms, being dismissed by multiple doctors, and misdiagnosis, she eventually found the tools and validation she desperately needed via social platforms like Instagram, YouTube, and Reddit. Culpo’s story is absolutely not uncommon. So many women dealing with conditions like endometriosis are frequently dismissed, and it’s natural that they try to find answers on their own rather than simply resigning themselves to live with their debilitating symptoms.
We don’t take women’s concerns and pain seriously, which starts a whole cycle in motion.
Then, we look down on women who fall under the spell of unofficial online medical research, but we also fail to give them the tools they need to have their questions answered or their treatments customized to their own needs. The relationship between the frequent medical gaslighting women endure and the medical misinformation trap can no longer be ignored.
The medical system is failing us. Between the challenges of actually scheduling appointments, to the time crunch many medical providers face, to the biases against women, to the lack of research devoted to conditions that affect women, to the broken sex ed and health education system that doesn’t give girls baseline information about their health, to the enduring stigma around discussions about our bodies, it’s a perfect storm for women to go out on their own in search of answers. Inevitably, they find themselves wondering where to draw the line between finding those answers and landing straight in the world of medical misinformation.
Medical misinformation is, I would argue, making it even harder for women to be heard.
I believe there’s an assumption that when a woman brings up a concern, it’s because she’s been swayed by Internet health searches, which (somewhat understandably) drive providers crazy. But what else can we expect? Medical professionals caution people against seeking out answers online, yet when you’re unable to get in to see a professional for months, or you feel rushed through your appointment, or your concerns are all shut down, or you’re not provided with a line of communication with a professional…well, what else are you supposed to do?
Our system needs to do a better job of acknowledging that women have so many questions and so few answers. We’re not automatically irresponsible or uneducated or undermining medical professionals’ experience if we go searching for our own answers. We’re desperate for clarity, and we’re not receiving nearly enough of it.
Zara Hanawalt is a freelance journalist and mom of twins. She's written for outlets like Parents, MarieClaire, Elle, Cosmopolitan, Motherly, and many others. In her (admittedly limited!) free time, she enjoys cooking, reading, trying new restaurants, and traveling with her family.