Medical gaslighting: Women are sharing important stories

It also felt surprisingly comforting to take control of the outside of my body as alarms went off on the inside.

That day, I had gone from feeling fine to feeling as if someone was sitting on top of me and clutching my windpipe. My chest felt tight, and every deep breath hurt. I couldn’t lie flat without needing to immediately sit up and gasp for air.

An online search of my symptoms told me I should go to the hospital.

My stubbornness told me I should take a hot shower.

The steam helped ease my breathing a bit and an at-home test told me I didn’t have covid-19. I didn’t want to alarm my family unnecessarily, so I downplayed how sick I felt to my husband and children, took an aspirin in case my symptoms were heart-related, propped myself into a sitting position in case acid reflux was to blame and tried to sleep in case stress was the culprit. I decided to wait and see how I felt in the morning before determining whether I needed to go to the hospital. I did this, knowing I would have advised a friend otherwise.

“Just go to the emergency room,” I would have told her.

“If it’s nothing, you’ll just lose time and money,” I would have nagged.

I am great at nagging friends and relatives to take care of themselves. I’m awful at doing that for myself.

When I was 19 and studying in Santiago, Chile, as part of an overseas program, I found myself doubling over from a pain that would radiate from my side to my back. It would come and go, and at moments sweep in with such intensity that I would immediately need to vomit. I went three months with that pain before finally telling one of the adults who managed the program. She gave me the name of a doctor, and I went to see him.

Within minutes in his office, I regretted it. He spoke to me in a condescending way that let me know he wasn’t convinced something was wrong. At one point, he pinched my stomach — not in the way a doctor does to check for pain but in the way a teasing uncle might. Two of my male friends who were waiting for me in an adjoining room heard me giggle uncomfortably. I felt embarrassed at that involuntary reaction but more so at my failure to speak up for myself. At the end of the visit, without offering a diagnosis, the doctor pulled a plastic vial from his desk and told me to put a few drops from it in water every time I found myself in pain. I’m convinced that vial contained only sugar. I followed his advice, and those drops did nothing but make water taste sweeter.

Several months later, I returned to the United States and saw another doctor. He ran tests and discovered I had gallstones. He removed my gall bladder and, for reasons he described as precautionary but I suspect also had to do with billing, my appendix.

At the time, the term “medical gaslighting” did not exist. There was no succinct way to describe how it felt to sit in front of a medical professional and have that person dismiss your complaints or misdiagnose you. There was no catchy phrase to express the frustration of telling a doctor about physical symptoms only to have them suspect the problem was in your head.

But now, women are using that phrase “medical gaslighting” to share those types of experiences on social media. And in doing so, they are creating a growing and important collection of horror stories that warrant attention. From doctors. From medical researchers. From women who have grown to dread seeking medical help.

The New York Times recently ran an article with the headline “Women Are Calling Out ‘Medical Gaslighting.’ ” The piece told the stories of several women and pointed to studies that addressed the different ways women were being failed by medical professionals. In it, researcher Karen Lutfey Spencer is quoted as saying, “We know that women, and especially women of color, are often diagnosed and treated differently by doctors than men are, even when they have the same health conditions.”

Everyone has probably had a bad experience at a doctor’s office. But there is a problem when certain people come to expect it as the norm, and so many women I know do.

For years, my mother complained of abdominal pain and pressure. Several doctors ignored her concerns before one finally ordered the right tests and discovered she was walking around with a basketball-sized tumor on her ovary. Thankfully it was benign and easily removed with surgery. She also had breast cancer three times. Her first diagnosis came when I was in high school, two years after she noticed a lump and a doctor suggested she cut back on coffee.

Cut back on coffee. Reduce your stress. Lose some weight. Women know those phrases well. That’s what it sounds like to have your legitimate health concerns brushed away.

Not all doctors, of course, do that. There are many incredible ones, including the two who took the time to order those tests for my mom. But it takes only a few dismissive doctors to cause conditions to go undetected and distrust to grow. There’s a reason many women of color feel the need to slip mention of their education or jobs into conversations with doctors. That instinct grows from the hope that a physician will see you as worthy of their time and care.

A study by the organization KFF found that women were more likely than men to have gone without health care during the pandemic. That means women skipped annual physicals, routine gynecological exams, mammograms, dental visits and more. That means while they were taking care of others, they were neglecting themselves. I was one of those women. At first, my reason for avoiding those doctor visits was because I didn’t want to risk catching the virus and passing it to my unvaccinated children. But then a children’s vaccine became available, and I still didn’t rush to catch up on my missed appointments.

When I found myself struggling to breathe, I was forced to consider why I was hesitant to seek medical help. It wasn’t because I didn’t have insurance. I do. It wasn’t because I didn’t know better. I had just written a column about heart health awareness. It was because I feared that if I wasn’t actually dying, I would be seen as wasting the staff’s time.

It is encouraging that women are sharing their medical gaslighting stories, but it is not enough. We need to learn from those stories. We need to nag one another to make those doctor appointments and, if they prove disappointing, to seek second opinions. We need to push for a medical system that won’t make people feel hesitant to seek help and then regretful when they do.

After a week of feeling miserable, I made an appointment with my primary care physician. She conducted a physical and referred me to a cardiologist. It took three weeks to get an appointment, but when I did, he listened attentively and eased my worries without dismissing them. I left his office without answers but with hope I would soon get them. Without me needing to ask, he ordered several tests.

When I went to schedule the first one, I found out the soonest appointment available was April 1 — my birthday. I hesitated and almost chose one of the slots in May.

Then I decided I didn’t have to look at it as something to dread. I could view it as a gift to myself.