When Hillary Koplinka was 19, her body suddenly became a stranger to her. She was achy and exhausted for no apparent reason. She’d also put on a noticeable amount of weight, which struck her as odd; though she was a college student, she hadn’t changed her diet or lifestyle, and her physique had held steady for years. She turned to her family’s trusted primary care doctor for an answer. It took her seven years to get one.
Koplinka found the doctor’s responses to her concerns patronizing. Tired? She was probably stressed from studying and needed more sleep; he recommended over-the-counter iron supplements. Achy? She ought to stretch, maybe take up yoga. For her sudden, inexplicable weight gain, the doctor prescribed exercise.
Koplinka hoped her doctor would connect the dots between her symptoms, but she soon realized he wasn’t taking them, or her, seriously. After a half-dozen appointments, she gave up. “I got angry,” she told me.
Koplinka’s experience is a textbook example of the diagnostic minefield that too many women face in the exam room. Ample research suggests women are more likely than men to have their pain downplayed or dismissed by doctors. Historically, male patients were the default subjects in clinical research, and much of what doctors learn today still overwhelmingly reflects male physiology. The ways in which women’s bodies present differently are sometimes poorly understood or just explained away.
Public health data emphasizes how often women get the short end of the diagnostic stick. One 2018 study led by Yale University public health researchers found that women were 50 percent more likely to be misdiagnosed after a heart attack. Among other factors at play, heart attacks don’t always manifest the same way in men and women. Not all women report chest pain, considered the hallmark symptom of a heart attack. They’re also more likely to report “atypical” symptoms in addition to chest pain, such as nausea and shortness of breath. And even when women do seek care for the same cardiac symptoms as men, doctors are still less likely to suspect heart disease. More broadly, an analysis of Danish medical data revealed that it took four years longer for women to receive a diagnosis than men — across 770 different diseases. (And Denmark is among the highest-ranking nations for gender equity.)
For women of color and others in marginalized communities, the care disparity “begins before they ever set foot in a hospital (if they ever do),” says health literacy advisor Abby Norman, author of Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain.
Still, Norman urges patients to be proactive about getting the care they deserve. While there’s no tried-and-true “script” for talking to doctors, there are tips and tools women can use to prevent doctors from ignoring or trivializing their symptoms.
- Keep a record of when, where and how your symptoms occur. While communicating symptoms, go into as much detail as possible. “Keep a diary or use a symptom tracker,” Norman advises. “If you tell a doctor you have abdominal or pelvic pain, that’s really vague. But if you tell them you have pelvic pain that’s worse when you have sex, or have a bowel movement, and that your periods are very heavy, that information will help them start to narrow things down.”
- Be confident. Norman concedes that this isn’t always easy, especially when you’re feeling sick. But even a pre-appointment rehearsal of “relaying your symptoms in a clear, succinct way” can be a game-changer. It’s also okay to bring notes — another reason to document your symptoms.
- Bring a buddy. “If you have a supportive friend or family member who is able to join you and you’d like to be there, having that support can be very helpful,” says Norman. A plus-one can lend moral support. But more than that, it can strengthen your case to have someone who spends a lot of time with you say they’ve witnessed your symptoms firsthand.
- Look into assistance from a patient advocate. “Many hospitals or community health centers have dedicated people who work with patients on a number of things: helping coordinate care and appointments, helping with finances and insurance,” Norman says. These patient advocates can lighten the overall burden of a prolonged medical issue and make it easier to focus on the treatment process.
- Repeat what your doctor told you about your condition or treatment plan before leaving the appointment. Summarize the doctor’s key points in your own words and ask for clarification if it seems like you missed anything important.
- Actually read your post-visit summary. After your appointment, you’ll either get an hard-copy summary of what happened or an updated note in your online patient portal. As soon as that information is available, check it. “Even ‘slight’ medical errors can have major consequences,” Norman warns. Make sure your info is accurate and up to date, and let medical staff know right away if it isn’t.
- If you are seeing doctors in different healthcare systems, states or even countries, request physical copies of your records and bring them with you. Even if you’ve asked a doctor in one location to send your records to a physician somewhere else, you don’t want to risk wasting valuable time in the event that something gets lost in the shuffle. “Having physical copies, including discs with any imaging tests you’ve had done that are important to your care, can be really helpful for doctors because that way they have everything right in hand when you’re there with them in the office,” Norman says.
Koplinka, now 26 and a medical social worker outside New York City, has advice of her own: “If your doctor isn’t listening to you, continue to do your own research and find doctors who will listen. It’s not easy, but it’s definitely worth it.”
As it happens, her story has a happy ending. On the recommendation of a colleague, she saw a new doctor this year, after largely avoiding professional medical care since college. During the initial consultation, Koplinka explained that she’d been struggling with the same set of symptoms for years and was close to giving up on the possibility of relief. But unlike her first doctor, this one listened to her concerns and pledged to work toward a solution.
“He took my blood and called me himself with the results,” she says. After an ultrasound, Koplinka got the concrete answer she’d been hoping for: She has Hashimoto’s disease, an autoimmune disorder of the thyroid that mostly affects women.
Koplinka now takes medication to regulate her thyroid and works with an endocrinologist to manage her ongoing treatment. “I feel more energized, more like myself,” she says. “I finally trust a medical provider again.”