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Broken Medicine

Why Are So Many Women Crowdsourcing Their Healthcare?

Whether they're feeling dismissed by doctors, afraid of tests, or generally confused, women are seeking healthcare information online—and it's leading to an epidemic of misinformation, and a new kind of health crisis.

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The internet has always been a place where people look for answers about their health. Who hasn’t scrolled through a site like WebMD, trying to piece together a diagnosis for their symptoms? There’s even a cheeky term for it: Dr. Google.

Amid this common behavior is another, darker story: When women feel dismissed or ignored by the medical establishment, they go online, particularly internet forums. They seek not only support, but answers they aren’t getting.

Just a few examples from Reddit threads over a few weeks this summer:

“I just feel like every time I see my gyno, she is a bit dismissive of me. … Has anyone else had this experience? I want to trust my gyno, but I don’t.”

“I worry that this new doctor just jumped to a quick conclusion to get me out of there. However, I might also be acting paranoid.”

“For 10 years I have gone mis/undiagnosed for a condition that I’ve been told I was the prime example of and while I’m happy to have an answer and treatment to hopefully reverse the effects of it, I also find myself angry and resentful to my doctors for this having gone unnoticed for so long. Has anyone else had difficulty with diagnosing and doctor issues regarding PCOS like this?”

Crowdsourcing medical opinions is something people already do, says Dr. Lisa Sanders, a clinician educator in the Primary Care Internal Medicine Residency Program at Yale School of Medicine.

“When somebody gets symptoms, it’s not like the first thing they do is pick up the phone and call their doctor,” Sanders points out. “The first thing they do is they tell their best friend, or their mother, or their co-workers.”

In fact, Sanders hosts the show Diagnosis on Netflix, which brings together medical knowledge from both professionals and laypeople via her “Diagnosis” column in the New York Times Magazine.

However, there’s a difference between information that’s been vetted by a medical professional, and information shared in forums like Facebook groups or Reddit threads by strangers with unknown motivations.

The latter, says Dr. Jen Gunter, board-certified OB-GYN, author of The Vagina Bible and DAME columnist, can be “a game of telephone.”

As she put it, “The problem is when you turn to an online community, you have no idea what information you’re really getting.”

“That’s one of the big problems like online and in chat rooms and threads,” she continues. “The more removed you get from the source of information, the harder it is to know if that original information was contaminated or not” by bias or false claims.

Yet it’s not a surprise even to medical professionals that women ask strangers for medical advice. Our medical establishment is dismissive of women’s pain, cisgender-focused and racist toward people of color.

Gunter, for example, says she sees a patient “every day” who has “been told there’s nothing wrong with her, or there’s no explanation for her symptoms.”

She adds, “And there’s almost always an explanation.”

Pelvic pain and endometriosis are two conditions that can be difficult to diagnose. They’re also conditions that too many medical professionals chalk up to just the cost of being a woman. (Gunter adds she has patients who are “shocked” to learn in her office “that that pain with sex is not normal.”)

“There is an underlying misogyny, a sexist aspect to our culture that is, ‘Women have pelvic pain—guess what? You’re a woman, that’s just what you deal with,’” says Dr. Leah Torres, a board-certified OB-GYN. “That’s a thing and that’s what I see.”

Many women say they don’t feel heard by their healthcare professionals. Jess Cording, a registered dietician, says she has heard “many, many times” from clients “that they felt like their doctor wasn’t really paying attention.”

A sexist society, which permeates even our healthcare system, all too quickly writes off women’s symptoms as exaggerated or imagined.

“Every single day I talk to someone who’s been told their symptoms are in their head,” says Gunter. “And when I tell them they’re not, they cry.”

Dismissing symptoms or arriving at a wrong diagnosis (what is called premature closure) is “more convenient for us,” says Torres.“It’s easier to say ‘you’re not in that much pain,’ ‘It’s your hormones,’ ‘we really can’t do anything about it, so you’re just going to have to live with it.’”

Arriving at a correct diagnosis can involve watching symptoms over a period of time. But for a woman who has been suffering, to hear ‘Let’s wait and see if it gets worse’ feels dismissive. And this haste for answers is compounded by the insurance industry. Insurance billing — that is, how practices and hospitals get paid — relies on assigning a diagnosis for billing, even if the medical professional has not yet arrived at one for treatment.

“There’s a lot of pressure on doctors to come up with an answer,” says Sanders. “It might not be the right answer, but it’s an answer.”

Additional huge complications are clinical studies and clinical research, in both humans and animals, that exclude females. “We’re really far behind as far as advances in healthcare that are specific to the female body and the female physiology,” says Torres. “For centuries, our medicine has been, and in many cases still is, based on a 75-kilogram male (165 pounds) … A lot of our medical research [and] a lot of medicines are studied with that model.”

Amid all this, over 27 million people don’t have health insurance, and co-pays and deductibles for the insured can be costly. Doctors often see you for 15 minutes or less. And the symptoms that are most-searched online are actually pretty vague (bloating, nausea) and could be a lot of things, while ER visits can be time-consuming (not to mention prohibitively expensive).

So is it any wonder, then, that women turn online?

The Perils of Dr. Google

There is no doubt that for some people, the Internet can prove that two heads (or millions of heads) are better than one.

In fact, in addition to Sanders’s show on Netflix, journalist Ann Curry is anchoring Chasing The Cure on TNT and TBS which crowdsource medical care writ large. “Are you struggling with a medical mystery?” the Chasing The Cure site asks. “Can you help be a part of the solution?” Clearly, many people are searching for just that and many others want to help.

However, beyond these vetted outlets are cracks where quackery and snake oil can flourish. Women desperate to feel better are targets for exploitative marketing practices, in particular for products whose claims are not supported by science and not approved by the Food and Drug Administration.

Many of these types of products fall in the wellness category and come with a pseudoscientific sheen. (Crystals, anyone? Or perhaps a Himalayan salt lamp?) There’s a chicness and aspirational drive to many wellness products that enable escape from clinical and regulatory scrutiny.

Other products and fads traffic on claims of being “natural,” despite the FDA’s acknowledged meaningless of that word. Torres, for example, told DAME how a patient recently asked her opinion on a monthly kit containing “natural” herbs and pregnancy tests which claimed to help women conceive.

Supplements are one huge grey area — and will be a $349.4 billion market by 2026. And yet, at present, the FDA states, “Federal law does not require dietary supplements to be proven safe to FDA’s satisfaction before they are marketed.” This means, says Cording, the dietician, that “supplements, in some regards, are still like the Wild West. They’re not as well-regulated as some other areas of the healthcare field.”

Cording was clear that she is not wholly against supplements. In fact, she recommends them to patients who have a nutritional deficit. But she is concerned that some of them waste customers’ money, especially when people take mixes of multiple supplements. For example, after a person consumes enough of some water-soluble vitamins to meet their needs, their body can’t store any more of the vitamin. In that case, she says, a person will have “very expensive urine” because “you’ll just pee out any excess,” says Cording.

The problem, she says, is that “there are a lot of gimmicky things on the market that don’t do all of what they promise to do.” She believes that in the  coming decade, the U.S. is going to see more regulation in terms of “the claims that companies are allowed to make and what they’re allowed to put on the labels.”

Until that happens, brands are counting on the cultural myth that pills or powders (or jade eggs) are safer because they don’t need to be prescribed by a doctor. Products seem trustworthy due to a belief that brands would not sell anything online, or over-the-counter “if it wasn’t totally safe,” says Cording.

These products can seem “less ‘serious,’” as Cording put it, precisely because they aren’t prescribed by doctors. However, anything you put into your body can have serious health repercussions. Supplements, in particular, can have “really serious physical effects” if people take too many or if they interact with other medications, says Cording. (Iron, for example, can be toxic when its too high, and fish oil may interact with blood thinning medication.)

‘You have to be wary’

American women have suffered a concerted effort by the Religious Right to chip away at their health.

That has been exacerbated, in some ways, by the internet, where anti-choice activists have been able to fear-monger and spread misinformation about women’s reproductive health, such as a non-existent correlation between abortion and breast cancer. Sexism, as well as both-sides-ism, lets misinformation flourish.

That’s why health information on the Internet that does not come from vetted medical sources should be scrutinized closely. “You have to be wary of where people are coming from and what their motivations are, what their biases are,” says Torres. That’s part of the reason why experts like she and Gunter use Twitter to educate their followers about reproductive health and to call out misinformation when they see it.

“There is an anti-science, anti-intellectual movement right now in our culture, in the United States specifically,” Torres continues. “That is quite scary, considering the scientific advancements that we have now to make science and the results of science safer and better for people.”

The reasons that women self-diagnose and self-treat are multifaceted and complicated, and improving healthcare for women will take a multi-pronged approach. Medical residents need more education about the biases that they bring into medicine. Doctors need more time to talk with patients and need to explain to their patients their processes for diagnosis. There needs to be more regulation, and marketing standards, for products which are especially sold to women. And on top of all that, the insurance industry needs a complete overhaul.

“We have to expect medicine to do better,” says Gunter. But patients also need to know how to sort out the good information from the bad online.

“I always say the internet is like the library and there’s lots of great information in there,” Gunter says. “But if you’re going to the library to learn about your health, you don’t want to read the fiction aisle — you want to go to the science section.”

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