But what’s worse is not knowing the reason you feel crappy. Finding a diagnosis for some conditions can mean traveling from doctor to doctor and enduring a slew of tests, some of which may be uncomfortable and invasive. Negative results can mean starting back at square one—a new guess at what the illness might be, a new set of providers, and even more poking and prodding—like the world’s worst game of Chutes and Ladders.
Surprise, surprise: Most of the people experiencing this confusing health-care back-and-forth are women.
Women are more likely to suffer from hard-to-diagnose conditions ranging from fibromyalgia and autoimmune diseases to reproductive issues like endometriosis and polycystic ovary syndrome (PCOS). Scientific research has historically excluded women, which piles onto the problem, explains Alyson J. McGregor, MD, cofounder and director of the Division of Sex and Gender in Emergency Medicine at Brown University and author of the forthcoming book Sex Matters: How Male-Centric Medicine Endangers Women’s Health and What Women Can Do About It.
If and when a diagnosis does come? Depending on what that “label” is, a woman may face a barrage of unique biases. Women are described in studies as more sensitive to pain than men, and women with pain are perceived as more emotional. (Or, you know, maybe we’re just on our periods! Eye roll.)
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“It becomes very difficult to trust yourself when an expert in a white coat who’s been to medical school for years is saying that your own experience of your body is not accurate,” says journalist Maya Dusenbery, author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.
For anyone out there navigating a stressful health situation who isn't feeling truly heard, Dusenbery talked to WH about what to say to get your doc to listen. And if you still don’t leave satisfied, don’t be afraid to seek out a second opinion, “or as many opinions as it takes to get the right diagnosis,” Dusenbery says.
If your provider says: “That’s normal.”
Follow up with: “This may be normal for someone else, but I know what’s normal for me, and this is not something I’ve experienced before.”
For example, if a doctor tells you it could just be stress, Dusenbery suggests explaining what stress typically looks like in your body and how these symptoms are different from that.
If your provider says: “We don’t need to test for that.”
Follow up with: “How did you arrive at that conclusion?”
This one is tricky, admits Dusenbery, because medical overtesting is a real issue. That said, you are most definitely entitled to ask your doc to explain their reasoning.
If your provider says: “Maybe you’re just not getting enough sleep/exercise/etc.”
Follow up with: “This is how my symptoms are functionally impacting my life.”
Dusenbery says it’s harder for doctors to disregard how a symptom like fatigue or pain is objectively affecting you versus how it’s making you feel subjectively. So if you are too tired to walk your dog or take a shower, say that explicitly.
If your provider says: “Let’s give it some time.”
Follow up with: “Here’s when I started experiencing the problem, and here’s how it’s progressed since.”
The idea, says Dusenbery, is to emphasize that you feel you’ve already waited and still haven’t improved (or maybe have even gotten worse), to encourage your doctor to deal with the problem now, not in a few weeks.
Illustrations by Amelia Butlin