Medical Gaslighting and Moms: My Experience with Autoimmunity


I am a white, cisgender, straight woman with health insurance. Because of these things, I move through the healthcare system with privilege. Yet, even I was gaslit for years about my medical concerns. What do I have to show for it? 2 autoimmune diseases and a propensity for self-doubt. 

While people are finally talking about this very common experience of having your medical concerns dismissed by your healthcare provider, I feel like no one is talking about medical gaslighting and moms. 

Studies show women, older people, people of color, and LGBTQ patients experience this more than anyone else. (Here’s another NY Times article that cites these sources.)

But what about medical gaslighting and moms?

The spotlight first needs to shine on Black maternal healthcare, where gaslighting seems to run rampant. Black women are three times more likely to die from a pregnancy-related causes than White women. Even Serena Williams (the GOAT herself) was not exempt from the horrific experience of having to advocate aggressively for her life from her hospital bed as “no one was listening to what [she] was saying.” 

In addition to Black maternal healthcare, my experience tells me that moms and medical gaslighting seem to go hand in hand at every stage of life. 

About 4 years ago, I developed a lump on my throat. I also noticed I was really tired all the time. My PCP ordered lab work and things were really off with my liver enzyme tests. After ultrasounds on both my liver and throat, multiple specialty doctor visits, a liver scan, a painful nodule aspiration in my throat and several cancer scares, I was declared absolutely fine by multiple doctors. I just had a very common female issue: a benign nodule on my thyroid. It was something I would need to live with, if I could, because surgery would remove at least half my thyroid and potentially affect my vocal cords. I also seemed to have a liver that was acting a little weird, but “maybe that was normal for me.”

Throughout this yearlong process of tests, scans, and oh-so-much bloodwork, I began to pay closer attention to myself. Did you know moms tend to ignore their own needs for the sake of their families? insert sarcastic chuckle. I realized how utterly exhausted I was and that a few things didn’t seem to be working right. I would develop pain in my hands and feet and experience a weird tingling at times. My diet was decent, I pushed myself to work out regularly, but I didn’t feel like myself. 

I oscillated between thinking something was really wrong and thinking it was all in my head. The medical professionals around me didn’t help.

It is my belief that, because I am a mom, medical professionals dismissed my experience of fatigue and pain. We are comfortable with the idea of moms being exhausted. We’ve made peace with the idea that moms are pushed beyond our edge. 

When I think of the things that were said to me by medical professionals, I want to scream!

Of course you’re tired all the time. You have 3 kids.

this level of energy must be what’s normal for you.

motherhood is just so exhausting. wait until they’re teenagers!

The crazy thing about all of it is that, after over a year of this, I began to gaslight myself. 

This is what they don’t tell you about medical gaslighting! You start to believe that your symptoms aren’t real. For me, that meant berating myself for being lazy and not having the energy to do the things I used to do. I carried so much guilt because of my fatigue. Caffeine and faking it were the only two things that got me through the day. 

At the urging of my spouse, I sought out different specialists. He could see what I couldn’t: that I wasn’t well.

During the height of the pandammit (not a typo), I saw a gastroenterologist that I believe saved my life. He listened to me (via Zoom!), and ordered a liver biopsy. The liver biopsy showed what labs, scans, and ultrasounds couldn’t: that I had autoimmune hepatitis. I immediately started medication and, years later, my liver is doing so much better. He also indicated that autoimmunity often travels in packs. And that it was possible something else was going on. He encouraged me to see a rheumatologist and to be as thorough as possible. 

In the fall of 2020, my body completely freaked out. My hands and feet hurt like never before and I knew something was terribly wrong. These were not symptoms of autoimmune hepatitis. 

While I waited for an upcoming rheumatologist appointment (waiting is a main character in my story), my gastroenterologist ordered more blood tests. When the results came back, it was clear: I also had rheumatoid arthritis.

When I got the results from that blood test, I called my mom and fell apart. All those months (years, really!) of berating myself for being lazy. For thinking what I was feeling was “all in my head”! There was actually something wrong with me. It felt so affirming. And also so terrifying and sad.

RA caused the fatigue and the pain I felt — not my head. I wasn’t exhausted from having three kids — I was sick. I didn’t need to learn to live with it — I could get treatment. 

Fast forward a couple of years and I’m not all better. But I know I’m not crazy. And I know that what I feel is real. 

I am grateful for my husband for recognizing and helping me name what is “normal” and “not normal” for me. I bow to the expertise that friends of mine like Erin Holt offer to the broader community. It’s also clear to me that not all medical professionals gaslight. My gastroenterologist listened to and affirmed what I said I felt. Because of his trust in me, his patient, I am on my way to healing. 

If you or someone you know is seeking answers, do not give up. Trust yourself. Be relentless. Medical professionals are often doing their best in a system that is, at its best, overwhelming. While they have expertise in their field, you have expertise in YOU. Use that expertise.

I believe that, because I am a mom and I know what true fatigue is (I survived 3 newborn stages, after all), medical professionals should have take me MORE seriously. My threshold for pain and fatigue is probably higher than most, because I am a mom. I hope I never doubt my own experience again.

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Allison’s mission in life is to notice the extraordinary in the ordinary. Her commitment to see beyond what’s in front of her was fostered by her degree in Philosophy and Theology from Boston College. Allison’s a book nerd and credits her parents and inspiring English teachers for her love of reading and writing. She went on to earn her Master in Pastoral Ministry from Boston College and then taught high school for several years, both in New England and San Francisco. After moving from San Francisco to Boston with her engineer husband, she began teaching yoga and working as a social media marketing consultant. Now a Portsmouth resident, she spends most of her days with her three daughters (she does not have enough arms) and does her best to find the bliss amidst the endless snacking, dance parties and tiaras. With all the beautiful chaos in her life, she’s grateful to have her partner-in-crime (husband Charlie) and fellow movie quote enthusiast alongside her. Her passion for writing first drew her to Seacoast Moms as a contributing writer, and her desire to connect moms of the Seacoast with businesses who serve and interest them led her to become SM’s owner. Being able to write about the ordinary grace present in motherhood, while interacting with incredible Seacoast business owners is a dream come true.