Chances are you know at least one woman who went to the ER only to be told what she’s experiencing is “normal” when it was anything but. Perhaps you also know someone who has been “blamed” for her health concerns. Women from around the world report that their doctors have tied their health problems to their mental health – oftentimes blaming depression or anxiety. They’ve also been told their medical concern is due to the fact they’re overweight (or under), are lacking motivation (aka lazy), practice poor self-care, or that it’s PMS, menopause, or (fill in the blank), which often delays effective – if not lifesaving – treatment.
A TODAY and SurveyMonkey poll from 2019 found that more than 25% of women with chronic health conditions said a health care provider ignored or dismissed their symptoms. Almost one-third of them said they felt like they needed to “prove” their symptoms to a healthcare provider, and one in four said a healthcare provider did not take their pain seriously.
For example, the New York Times reports that “by the time Michelle Cho, 32, was diagnosed with systemic lupus erythematosus, a disease in which the body slowly attacks its own tissues, she had developed kidney failure, a heart murmur and pneumonia — yet the first doctor she went to diagnosed her with allergies and the second doctor thought she was pregnant.”
A recent article published by the Irish Times shared a similar story about Eleanor – a 37-year-old woman who went to the ER with severe chest pain. “She was diagnosed with slightly high cholesterol and sent home. Three days later, she suffered excruciating pain and was taken to hospital in an ambulance. There, she was asked if she had suffered from panic attacks and was left overnight in a cubicle before doctors realized she was having a heart attack. She needed eight cardiac stents. ‘I am sure no man would be asked if they suffer from panic attacks while they’re having a heart attack’.”
Then there’s our friend Barclay DeVeau, who got very sick in 2020 with a wide range of symptoms that ultimately affected seven systems of her body. For more than eight months she begged doctors to help her as she felt a poison spreading throughout her body. But it was not until she had a seizure – which led to a temporary coma – that she started being heard.
“As I attempted to get a diagnosis and help, I was repeatedly dismissed, disregarded and disbelieved, even as my symptoms increased,” Barclay said. Those symptoms weren’t imagined, but were instead a rare bacterial infection that had taken hold and spread to her heart, brain, autoimmune system, her neurological system, connective tissue, joints, and muscles.
These women are not alone. Northwell Health’s Katz Institute for Women’s Health reports that female patients are continuously gaslighted about their physical and mental health. “Whether its heart disease labeled as anxiety, an autoimmune disorder attributed to depression, or ovarian cysts chalked up to ‘normal period pain,’ many women’s health issues are likely to be misdiagnosed or dismissed by doctors as something less critical.”
According to Gina Nebesar, co-founder and Chief Product Officer of Ovia Health, “Medical gaslighting, a relatively new, non-clinical term, refers to the practice of minimizing or dismissing a patient’s symptoms, concerns, or experiences. Often, symptoms are written off as psychological in nature, or patients are told that what they are experiencing isn’t serious or that it is normal. The problem of medical gaslighting and its downstream effects on care and clinical outcomes is long-documented—and it’s a phenomenon that disproportionately affects women, particularly women of color.”
Dr. Susan Wood, the Director of the Jacobs Institute at George Washington University, says a lack of research on women’s health was identified several decades ago, and while gaslighting exists to this day, it is not necessarily conscious. “Most physicians and health professionals are in the business of trying to help people. But they have not necessarily been trained on sex and gender differences issues,” she said to Healthnews.
The issue could be that women often have far different symptoms than their male counterparts, or that scientists know far less about the female body than they do about the male body probably because in 1977, the U.S. Food and Drug Administration began recommending scientists exclude women of childbearing years from early clinical drug trials in case they became pregnant. Researchers also worried that hormonal fluctuations could muddy results. Thankfully that changed in 1993 when it was mandated that women and minorities be included in medical research funded by the National Institutes of Health — but that doesn’t apply to privately funded studies, which means there are still huge knowledge gaps.
What can you do if you think your doctor is gaslighting you, and how can you protect yourself? Well for starters, have someone else – friend or family – go with you at the doctor’s office. They can advocate for you, listen, take notes, and ask questions on your behalf. It’s also a good idea to ask for a second opinion, especially if you’re not comfortable with your treatment or diagnosis, or lack thereof.
If those things don’t lessen your concerns, move on. Dr. Stephanie Trentacoste McNally from the Katz Institute says if you feel you’re not being taken seriously by your doctor, you need to find another provider. “A good physician takes the time to listen to a patient and steer them in the right direction. Can hormonal changes cause anxiety or affect our mood or sleep? Absolutely. But using ‘hormones’ as the default answer isn’t acceptable.”
If you have been in a situation where your voice wasn’t heard – in your doctor’s office or elsewhere – we would like you to join us in one of our focus groups. Dr. Nancy is updating her 2008 book, Timeless Women Speak, Feeling Youthful at Any Age, and she can’t do it without all of you. She needs to find out how women feel today about aging and how it’s affecting their lives. Our focus groups are starting right away. To participate, please email us at [email protected] as soon as possible. All focus groups will be scheduled for one hour on Zoom in the coming weeks. We make the biggest impact together, and together we can make our voices heard.