Medical gaslighting

How to save yourself from health care

Jan 19, 2024

Since everyone is sick right now, let’s review how to visit the doctor if you’re not a straightwhitecisman.

“What if nothing’s wrong with you?” a gastroenterological asked me the day before she called with the results of my blood work that revealed a maybe-fatal condition, after I’d been stalking a diagnosis for a year and a half.

This is medical gaslighting.

Medical gaslighting is when medical professionals, to whom you go for help, brush off your concerns/symptoms/pain and make you question your body/sanity/reality. It causes pointless suffering and death. And if you’re a woman, BIPOC, LGBTQIA+, or older, then you’re more likely to endure it. Cool.

Medical gaslighting has existed in various forms since the beginning of bodies:

Red flags

Red flags that I ignored — because I wanted to be a “good patient” and not “annoy” anyone — were dismissive, condescending questions about my symptoms (which were killing me, figuratively and literally) that made me feel unimportant and ridiculous, like, “Are you even in the pain that you say you’re in?”

I heard labels like “oversensitive” to describe me, a person in pain.

I was made to wait too long for appointments/diagnoses/treatment (as women often are), and I was misdiagnosed (as women often are, especially for autoimmune diseases).

Some doctors preferred to guess my symptoms rather than ask me to talk about or describe them.

I was so, so lonely. Philosopher Jill Stauffer calls this kind of loneliness “ethical loneliness” from the “injustice of not being heard.” Meghan O'Rourke explains in The Invisible Kingdom: Reimagining Chronic Illness, “The term speaks to the special pain of being part of a silenced group, and the pain you feel when the possibility of communication disappears simply because of your identity. The loneliness is profound.”

I felt like I couldn’t ask questions or disagree or emote.

You know when you worry about texting your crush too much and making them not like you? That’s how it felt with medical professionals.

After I reposted this tweet, the writer Sonia Voldseth messaged me to add: “And then berate yourself over and over for not saying anything, then subsequently find yourself in the awkward position of wanting to break up with your hairdresser but feeling too weird about it even though they ruined your hair.” We know how we feel about our hair, and it isn’t even an internal organ.

The advice literature about how to have a good medical appointment is to speak up for yourself, as if that were legal, as if we can speak up without an internal debate and dress rehearsal and self-berating. As if we can speak up and be listened to and believed and helped.

Hi, you’re the problem; it’s you.

“Often (but not always) female bodies are sexy, hot, so it can be confusing when they present as sick or fat or even, in some cases, nonwhite.”
—“A Lecture on Women’s Health at Any Medical School” by

Gina DeLuca

When I was sick, I was more afraid to be rude to doctors than to die. It’s just that some of us would rather wait and see if we die than aggravate anyone or overreact or appear nuts. Because that’s how we were socialized. We woke up like this! Which can make questioning a doctor or asking for help unthinkable.

Besides, my testimony wasn’t enough; doctors had to find something wrong with me beyond me saying something was wrong with me. This kind of thing forces too many women to wait until something is really, really wrong.

“Finally I shat blood. That is to say, finally my problem got bad enough where I could call it a problem and ask for help for my problem; blood clarified that I wasn’t making up yet another symptom.” —Hysterical

“I’d love to get an appointment soon, but it’s just easier if I show up sick enough to force his hand to actually give me the correct medical care.”

jk you’re not the problem

You’re not crazy. You’re not imagining it. When something’s wrong, you know it, you feel it, you’re in bed because of it. You’re not making it up, and no one in a position to help you should assume you are. To sum up years of my research, women*:

are under-treated for physical ailments
are over-diagnosed and overmedicated for mental illness**
respond to medication differently than men and during their cycle
are prone to an adverse drug reaction
are more prone to chronic pain
are more prone to mysterious pain

*Note: when medicine says “female” and “women,” the institution has a smaller group in mind. “Woman” often means “white, cisgender” woman, which does not represent all women, not Black women, Indigenous women, women of color, trans women, nonbinary people, people with uteruses, pregnant women, menopausal women, incarcerated women, immigrant women, uninsured women, working‐class women, women in shelters, fat women, or disabled women, even though differences in race, history, age, class, and circumstance alter a patient’s treatment and treatment options.

**To repeat for those in the back: the medical industry diagnoses women too often for speaking/feeling/emoting but doesn’t diagnose them enough for actual illness.

What to do

Based on everything I’ve read and my lived experience, here’s what women should know before, during, and after seeing a doctor.

Before:

Prep. Keep receipts of your symptoms and when they occur and what they feel like and what they stop you from doing. Have a list of your medications, and know your medical history. Keep records of tests and treatments you’ve tried and every result.
Keep a detailed list of symptoms: what are they; what do they feel like; what sets them on fire? Where does it hurt, and when does it hurt?
- A passage in the novel Life Sciences by Joy Sorman gave me vocabulary words for pain, when the protagonist must “conduct a seismographic survey” of her pain, to characterize it:

“Does your pain feel like: chills, burns, cuts, rips, stings, twinges, constrictions, spasms, quivers, punches, throbbing, itching, crushing, stretching, twisting, wrenching, tingling, pinching, pins and needles, numbness, tightness, heaviness, electrical shocks, hammer blows, knife stabs? Cross out any that do not apply. Would you describe your pain as: uncomfortable, cumbersome, pervasive, radiating, suffocating, exhausting, tiring, oppressive, anxiety-provoking, insistent, agonizing, exasperating, infuriating, depressing, annoying, trying, suicidal, awful, intense, horrible, unbearable, nauseating, dizzying, cruel?”

Definitely don’t do what I did, which is try to win over doctors, as if they must like you before they’ll listen to you.

“…for their own safety, it’s best to encourage your female patients to pipe down.”
—“A Lecture on Women’s Health at Any Medical School” by

Gina DeLuca

During:

Be a nerd, and take notes.

Know and understand the following:

It’s appropriate to push back and to be a part of the decision-making.
It’s OK to get second or 6th opinion.
It’s OK to leave an appointment if you feel uncomfortable or not heard.
- Note: Leaving a medical appointment or a relationship or a conversation if you feel uncomfortable or not heard isn’t “rude.”
Demanding help isn’t “being demanding.”
Asking too many questions isn’t asking too much.
- Note: Asking questions can mean the difference between a misdiagnosis or a too-late diagnosis and lifesaving care.
Asking a doctor to do his job isn’t “wrong.”
Verbalizing your needs, fears, and boundaries does not make you “a whiney bitch.”
Men do all the above all the time without judgment.
- Note: We don’t have “one health care system,” we have multiple writes Linda Villarosa in Under the Skin: The Hidden Toll of Racism on American Lives and on the Health of Our Nation. It’s standard for white cis men to have shorter wait times, to be given pain medication when they need it (or don’t), to be referred for tests, to be listened to and believed right away—so when that doesn’t happen, then question it.

After:

Heal, obviously!

My mom, who survived breast cancer three times, says, “You must be your own advocate.” Who else will advocate for you? As Alice Sebold wrote her memoir Lucky, “You save yourself or you remain unsaved.” Dr. Gabor Maté in When the Body Says No has the same advice to a woman whose hero was a father who ignored her: “find yourself a new hero — one who can model some self-assertion . . . to heal, you may wish to become your own hero.” Do that.

Become the leading expert of your body, even though for non-men being an authority on yourself isn’t “chill.”

Change the medical system. This is advice for everyone who isn’t a patient. Specifically:

Listen to and believe #allwomen.
Stop telling women to “lose weight” as a cure-all.
Treat a woman’s body like the human body. Both the ancient and current medical system consider the male body the “human body” and the women’s body “atypical,” so women’s suffering isn’t “human suffering” or important.
Include women in equal numbers in medical research, even when women are on the rag.
Fix data to show that women’s pain is routinely shelved by the medical community.
Test medications on women. (Because drug dosages for adults are based on a man-size person, women are often overmedicated, which isn’t as fun as it sounds.)
Use a new vocabulary to discuss women’s pain that’s true to real events. This can change how we perceive, talk about, talk to, study, understand, and care for non-lying women in pain.

“You’ll know she was telling the truth if she dies.”
—“A Lecture on Women’s Health at Any Medical School” by

Gina DeLuca

How are you feeling, girl?

Medical gaslighting

How to save yourself from health care

This is medical gaslighting.

Red flags

Hi, you’re the problem; it’s you.

jk you’re not the problem

What to do

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