Danielle Prescod has known for a while that something in her body was “very, very off.”
The 34-year-old author of “Token Black Girl” visited a primary care physician about a year ago with complaints of cramping pain and weight gain in her lower belly. She says the doctor didn’t take much time evaluating her concerns before diagnosing her with chronic obesity.
“Her solution was to immediately recommend that I go on Ozempic,” Prescod tells USA TODAY, referencing the new diabetes drug known for inducing weight loss. But that felt like a dismissive, incorrect diagnosis to Prescod, who exercises regularly, eats a balanced diet and doesn’t drink alcohol. Instead, she spent a considerable amount of time over the past year making appointments with specialists to figure out what was actually wrong.
She was finally diagnosed with PCOS and several uterine fibroids, some of which were so large it’s “the equivalent to being 20 weeks pregnant, which would explain why my stomach is distended,” she says.
Prescod is one of many who have experienced an issue dubbed “medical gaslighting.”
“When I tell doctors I’m in pain, it’s almost like they don’t believe me,” Prescod says. “It makes me lose hope in the medical system at large. I’ve always been someone who’s like, ‘you go to the doctor when you feel sick and the doctor will help you.’ My grandmother was a nurse. I looked at the medical system as something you should trust. And now I don’t.”
Those who have experienced medical gaslighting have been able to find a community on social media to connect with. The hashtag #MedicalGaslighting has 222 million views on TikTok. But why is it so common? Experts say a lack of time to properly get to know patients, changing medical research and a history of studies that focused mostly on white male patients are to blame.
What is medical gaslighting?
“Medical gaslighting is when somebody presents with symptoms that are ignored or dismissed, chalked up to anxiety or imagination, possibly told they’re too young to develop cancer or chronic illness, and having their symptoms minimized without being properly addressed,” says Dr. Robyn Roth, a breast health expert and board-certified radiologist.
It disproportionately affects marginalized communities including young women, the elderly, minorities, low-income communities, queer patients and those who are overweight or obese, experts say. And the major issue with medical gaslighting is that it often can lead to delayed diagnoses and worse outcomes.
“Inherently, we trust our doctors and assume that they’re experts in their fields,” Roth says. “So when they say nothing’s wrong, you want to believe them, especially if it’s something you’re worried about.”
‘Everyone deserves to be heard’: Why medical gaslighting persists
Men and women perceive pain differently. The way they present with common diseases are also different, and because medical research historically has focused on male patients, research has shown that women suffering from the same issues often go undetected because they don’t present the same symptoms men do, experts say.
“Knowledge about sex and gender differences in health and disease can be lifesaving,” says Dr. Janine Austin Clayton, director of the NIH Office of Research on Women’s Health.
“Women’s pain is often dismissed as ‘in their head’ and even the pain of young girls is seen as exaggerated,” Clayton adds. “Heart disease is the number one killer of women, but the signs and symptoms of heart disease are considered ‘different’ in women. They are not different; they are women’s symptoms.”
Clayton highlights a 2019 study that found that women on average are diagnosed with diseases four years later than men. “That is striking,” she says. “It represents valuable time that could have been used to treat the condition.”
Many in the medical field recognize a a need for better partnership between doctors and patients, Clayton says. She notes the value of continuing education, which helps ensure professionals are as up-to-date as possible on medical practices.
“The bottom line is everyone deserves to be heard,” Clayton says. “People deserve care that addresses their health needs and provides appropriate treatment.”
Tips for preventing and combatting medical gaslighting
Prescod documented her ongoing medical issues and subsequent investigation with her social media followers, many of whom respond with their own struggles to find a doctor who will take their symptoms seriously.
Their responses gave Prescod encouragement to continue looking for answers. “It’s helpful when people say ‘this is happening to me, too,’ ” Prescod says.
Feeling like you have experienced medical gaslighting? Consider these tips:
- Get to know your body. You know when something is wrong. Trust your instincts.
- Prepare ahead of your appointment. Clayton recommends writing down your questions beforehand and making sure to address each one before the appointment ends.
- Take your well-being into your own hands. Amid figuring out what was wrong, Prescod focused on getting enough sleep, reducing stress, exercising, drinking plenty of water and taking vitamins.
- Don’t be afraid to ask for clarifications and second opinions. “I always encourage people that if something feels off, you push your doctor a little bit,” Roth says. “Say, ‘how do you know this is a cyst? Would any type of imaging be helpful to evaluate this area? What would be the next test that we should do in order to exclude something more serious?”
- Be your own advocate. “Start treating every visit to a health care provider as if your life depends on it,” Clayton says. “One day, it could.”
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