Medical Gaslighting

medical gaslighting
When I listened to my body, I knew something was seriously wrong, but as a 24-year-old woman I didn’t know how else to push to be taken more seriously.
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Few young people pay attention to the inner workings of their bodies—the heartbeat, the blood flow, the digestive tract. When everything is working properly, we don’t grasp the fact that our bodies are vessels of complex systems -- constantly crunching out billions of tasks just to keep us breathing.

I didn't realize I was inhabiting a body until my nineteenth birthday, when a silent ulcer ruptured in my stomach. 

It was the summer before college. A sweltering mid-July day in Los Angeles. I was driving home from my birthday lunch with some high school friends when the pain began. It started as a dull ache in my left shoulder, but within minutes it morphed into a sharp shooting sensation that surged through the entire left side of my body, forcing me to pull over into a parking lot and curl into a ball in the backseat.

I remember restlessly squirming in the passenger seat as my dad drove me to my pediatrician’s office. She took one look at me and told me to go to the ER immediately.

But at the emergency room, my pain was met with complacency and questioning. The doctors said maybe it was constipation or my period or pregnancy. Maybe it was anxiety, stress, nausea, or nerves. Maybe it was all in my head.

Was it all in my head? I wondered, as another searing pain shot up my left arm. The ER doctor was about to send me home with two Tylenol when my own doctor called in and ordered a CT scan. She’d known there was something seriously wrong.

The scan showed that a silent ulcer had ruptured in my lower stomach. The pain in my shoulders was due to air in my abdomen that was not supposed to be there. The switch flipped immediately: I was suddenly the spectacle of the ER. Young residents and nurses surrounded me. I was met with sympathy and awe. I felt like I was an exhibit on display.

“Wow! I don’t think we’ve ever seen this in someone your age,” a bald male nurse said emphatically. “And the pain … I’m surprised she’s even able to speak.” “Seriously, they equate the pain from a ruptured ulcer to giving birth.” “Let’s get her some morphine stat.”

An ER doctor with piercing green eyes came over as I was being hooked up to a morphine drip. “Alright, we need to get you in for emergency surgery.” Suddenly, I was being wheeled on a gurney into an elevator leading down to surgery. At that moment I felt completely detached from my body. A floating soul, with absolutely no control over what might happen as I went under.

Luckily I had great insurance, which got me a great surgeon, who was able to laparoscopically discover and repair the hole in my stomach, caused by an ulcer I hadn’t even known was growing rapidly inside of me.

But as I recovered I had so many questions: what if I hadn’t had such good insurance? What if the ER doctors had sent me back home without doing a CT scan? Why wasn’t my pain taken seriously in the first place?

There were so many what ifs and whys that could have made my situation turn out very differently. I spent the first semester of college wildly anxious. In my free time I shuffled in and out of different doctor’s offices, none of whom really knew why I got these stomach ulcers in the first place.

All of the doctors I saw were shocked and intrigued by what had happened to me, but when my labs came back clean, they each wrote it off as a fluke and quickly lost interest. When I expressed problems with indigestion and constipation over the coming months, they always said it was probably just anxiety and sent me home with another laxative or antacid to try on my own.

After what had happened, I was terrified of my own body and no doctor felt like my partner in figuring out how to best care for it. What had happened to me was scary and I definitely did suffer anxiety from it. But the doctors I saw each made me feel unnecessarily anxious and not validated, and therefore afraid to go to them with any concerns.

For a year, I planned everything I ate, stuck to strict sleeping schedules. I was deathly afraid of putting anything “bad” inside of my body for fear that something might explode inside of me again. When I was supposed to be young and carefree, I spent so much time holed up in my dorm room, so afraid of getting sick again.

Time helped to heal a lot of my fear surrounding the body. For a while, I lived a normal 20-something life, finally able to enjoy the carefree aspects of being in a young, healthy body. I would experience stomach issues from time to time, but I never felt I had a doctor I could trust. I’d internalized the messages they’d given me, de-validating my own concerns. So when I felt pain, digestive issues, constipation, I just chalked it up to anxiety and went on with my day.

This November, my constipation started getting worse. The usual tips and tricks that doctors had given me over the years weren’t working. For weeks I felt awful. I had trouble going to the bathroom and digesting any food. I was bloated, gassy, my stomach was extremely distended. Anything I tried to eat gave me unbearable indigestion. I called my gastroenterologist every day, trying to get an appointment. Each time they told me my case was not urgent and he wouldn’t be available for another six months. Other doctors I consulted told me to just try more laxatives, prunes, or coffee.

I didn’t know how to advocate for myself more effectively. When I listened to my body, I knew something was seriously wrong, but as a 24-year-old woman I didn’t know how else to push to be taken more seriously.

The day before Thanksgiving, I felt so bad that I took myself to the emergency room. It was like a flashback -- I was met with complacency and questioning yet again. I sat in a tented outdoor ‘waiting room’ where a masked male nurse asked me all of the usual questions -- nausea? Vomiting? Period? Any chance you could be pregnant?

I tried to explain that I had experienced constipation for years and it felt different this time. I tried to explain my surgical history, but the doctors made me feel like I was wasting their time. They took an X-ray of my abdomen. I remember a young, male doctor coming in and saying with a smirk, “wow, you are literally full of shit.” He told me to just buy magnesium citrate at the drug store and drink the bottle.

“You’ll be fine,” he said, “It’s just constipation.”

The last thing I remember in full is sitting with my sister on the couch, turning on The Devil Wears Prada after drinking the bottle. I began feeling nauseous and having to go to the bathroom. I thought the magnesium citrate was working and I was so excited to finally feel some relief. But then I started feeling worse … a lot worse. Every time I went to the bathroom, I would projectile vomit. I was sweating and cramping. And then I started getting confused. I remember bits and pieces of sitting on my bathroom floor with my sister, telling her I was scared as I threw up, disoriented, my vision blurring, asking if everything was okay. After that, my mind goes blank.

I was told that my sodium dropped so low from vomiting that I had a seizure, the paramedics brought me to the hospital where my muscles were in spasm from vomiting so much. I was given a slew of sedatives. I woke up almost three days later in the ICU with a catheter in. I had no idea where I was or what had happened.

I had this reaction to the magnesium citrate because I’d had a bowel obstruction for weeks that had been overlooked by my gastroenterologist and then the ER doctor as I tried to voice my concerns, get appointments, care, or better advice.

Women’s pain is assumed psychosomatic until proven otherwise. For me that proof has now come in the form of near-death experiences not once, but twice.

Recently I have begun interviewing women who have experienced medical gas lighting or neglect and have come to see that my situation is far from the worst. Women with gynecological conditions like endometriosis and vulvodynia particularly suffer from medical neglect and misdiagnoses, often for decades. So much suffering could be prevented with more research and time spent on understanding the female body, but also simply by doctors listening to us with more seriousness, compassion, and nuance.

Doctors need to realize that medical gaslighting creates an extremely problematic feedback loop where patients feel scared or discouraged from seeking care when they actually need it. Doctors need to realize how much their words matter -- they stick with us for weeks, months, even years. I cannot tell you how many women I’ve spoken to who have expressed that they began to doubt their own pain, who felt they had nowhere to turn, who became suicidal, who still are in therapy for trauma, because of the experiences they’ve had with medical gaslighting.

It is enraging, but also empowering to learn that as women in this skewed medical system, we are often our own best and only advocate. I have learned the hard way to trust my own body first. I will continue fighting for women to be heard in this system, even when everything in place is working to keep our bodies invisible and our voices silent.

 

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