Medical gaslighting — when a health care provider tells you that your symptoms are all in your head or it’s just stress — can take an enormous toll on your mental health.
Trigger Warning: The following story mentions a suicide attempt. Proceed with caution. If you feel you are at risk and need help, skip the story and get help now. Options include: Calling the U.S. National Suicide Prevention Hotline at 800-273-TALK (8255), calling 911, and calling a friend or family member to stay with you until emergency medical personnel arrive to help you.
It’s the night before my first appointment with a new allergist. I don’t even bother trying to sleep. I’m too nervous. Instead of sleep, I refresh my twitter and Facebook feeds. I take care of the laundry, reveling in one of the few perks that comes with insomnia, like free rein of the apartment laundry room at 3:30 a.m.
My husband wakes up for work at 6 a.m. He doesn’t even bother asking if I got any sleep. He knows I’m already afraid, even before I set foot outside our apartment: am I going to come home crying and broken? I don’t expect to be believed anymore by the very doctors I seek out for medical treatment, and I’m never surprised when my complaints of chronic (and still undiagnosed) symptoms are reduced to nothing more than orders to “eat less” and “move more,” or worse yet: “it’s all in your head.”
I used to blame myself. Maybe the doctors were right. Maybe I was crazy. They are the experts, after all.
Journalist and author Maya Dusenbery knows this struggle. The author of Doing Harm: The Truth About Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, Dusenbery interviewed over 200 women with similar experiences to what she refers to as medical gaslighting.
“I was diagnosed with rheumatoid arthritis several years ago. While I got a diagnosis fairly quickly and easily, it prompted me to learn more about autoimmune diseases in general. I quickly realized how many other autoimmune patients — the majority of whom are women — weren’t nearly so lucky as I was,” she said. “I started paying more attention to how many women I knew seemed to have a story of health care providers who didn’t take their symptoms seriously — who dismissed them as ‘normal’ or ‘just stress’ or even disbelieved them entirely.”
The result of being dismissed by the medical community for legitimate complaints is that women are labeled “complainers” during their early searches for answers.
This all sounds so familiar to me that it is both comforting to know I am not alone and utterly depressing that there are so many of us being ignored by the doctors we entrust with our care.
My own experiences with gender-based medical gaslighting stretches back decades, starting with the pediatrician who dismissed my hesitant admission that I thought I might have an eating disorder. And just a few weeks ago, a dermatologist flat-out told me that the painful, chronic, and recurrent skin lesions I have been experiencing since my daughter was born almost 12 years ago — and that I am quite certain are the result of an undiagnosed autoimmune condition — are nothing more than a reflection of my dermatillomania (skin picking disorder).
When I tried to explain yet again that I only dig at the swollen spots to relive the buildup of pressure, he prescribed me Gabapentin, smiled, and told me to make an appointment for a follow-up in six months.
This Girl Thinks She Has an Eating Disorder
When I was 15, I sat in my pediatrician’s office in shock, listening to her tell the dietitian in the hallway that I just needed a talk-though on healthy eating and to send me home with some pamphlets on diet and exercise. The doctor had closed the door behind her, of course. But she hadn’t accounted for the paper-thin walls.
“This girl thinks she has an eating disorder because she can’t stick to a diet,” I heard my doctor say. I wanted the floor to open up beneath me. Instead, I nodded and smiled when the door opened, forcing my smile bigger as the dietitian gave me my pamphlets. When I got home, I promptly binged and purged, and continued to do so for six more years because I wasn’t taken seriously when I stammered my way through the phrase: “I think I have an eating disorder.”
A Burden in the Emergency Room
When I was 21, I attempted suicide before realizing that dead was permanent and scared myself into action. I called my boyfriend at the time for help, but soon I was feeling smaller and more of a burden in the emergency room than I had felt before the suicide attempt.
When the nurse asked if I felt like hurting myself again, I lied and said I was fine because I knew that if I said I still felt suicidal, they wouldn’t let me leave. I couldn’t figure out how to explain that “feeling suicidal” didn’t mean I wanted to attempt to harm myself again, but it didn’t matter. The nurse didn’t give a damn, anyway. When I said I was fine, she sighed in obvious relief, but it wasn’t relief that I was actually fine (I wasn’t), it was relief that she wouldn’t have to deal with me anymore. She didn’t say it, but I felt like I was just another messed up college kid to deal with. I was checked off her list of things that mattered, and went home to cry myself to sleep.
People Like You Can’t Be Helped
When I was in my mid-30’s, I sat before a dermatologist who was examining me for that recurring rash and inflammation cycle that results in painful sores and welts coving my entire body. He asked me if I pick at my skin, looking at my arms and face. I nodded, honest, and told him I knew I needed to see a therapist or psychiatrist about anti-anxiety meds to control the compulsions to pick at myself, and asked him how he could help me with my skin.
“People like you can’t be helped,” was the reply that his nurse later apologized for as I sat on the exam table weeping and broken, once again dismissed by the medical professional I had sought out.
I thought that maybe I’d have better luck with a nurse practitioner.
My appointment coincided with a flare-up of my symptoms. Sitting before her with my daughter at my side, I watched her watch me, taking stock of the bright pink, weepy rash that went from chin to chest and the scabs and new lesions on my arms and legs. There was something very obviously wrong, and I remember thinking how lucky I was that my skin was on fire, my entire body inflamed inside and out for her to see. The fact that children on the street saw it and stopped, stared, and pointed at me before their mothers hurried them away actually had me looking forward to the appointment. I wasn’t crazy: there was (and still is) really something wrong with me. The proof was in the mirror.
Instead, she ignored my description of my symptoms, disregarded the pattern in which they appeared, and asked me how often I exercised and what my diet consisted of. She told me I was likely diabetic (I wasn’t), and that all of my health problems would resolve if I ate less and exercised more.
The author on the day of her appointment.
It took two years before I was brave enough to see another doctor -any doctor – after that one. I’m still searching for answers and a doctor who will listen. All I have to show for it are severe anxiety and soaring blood pressure readings at the end of every appointment.
Medical Gaslighting and Mental Health
To Dusenbery, my experience makes sense and fits with the research and stories she shares in her book.
“I think medical gaslighting can take an enormous toll on your mental health. Even for very privileged women, it can be very difficult to trust yourself and what your body is telling you and push back when an expert with a white coat and an MD is insisting that ‘nothing is wrong,’” she said. “I have to believe that many health care providers simply don’t realize the harm they’re capable of causing by dismissing or disbelieving women’s reports of their symptoms.”
There are the good ones, of course. The doctors who have believed something is wrong but couldn’t find the answer. These are the doctors who treat their patients with respect and dignity and listen. And then there are the ones like the dermatologist who told me people like me could not be fixed.
But I know better now. I am not the one who is broken.
If you or someone you know may be at risk for suicide, immediately seek help. You are not alone.
- Calling the U.S. National Suicide Prevention Hotline at 800-273-TALK (8255)
- Calling 911
- Calling a friend or family member to stay with you until emergency medical personnel arrive to help you.