Medical Gaslighting

 I have known RA Stone for a few years now, and when she offered to write a guest post for me, I jumped at the opportunity. She shares her experiences with medical gaslighting, a cause of medical trauma, in the post below.

When I was eight years old, I had one of about a dozen orthopedic surgeries.  I was in casts from my toes to my hips, and I had four long incisions – two on each leg.

One day, I was in the hospital recreation room, and my mother noticed blood on my cast.   She requested that the nurse on duty call the doctor immediately.

The nurse refused, saying that the small spot of blood was only leftover from my operation and must have splashed onto my cast.

Some time went by. The blood spot got bigger.

My mom continued to argue with the nursing staff until the doctor was called.  

The doctor immediately ordered my cast removed, saying that my stitches had come undone.  

If my mother had not continued to advocate for me against the nursing staff, I could have bled to death. 

She and I were repeatedly told that nothing was wrong.

Another incident during that stay, which only I seem to remember, occurred when my mom was not in the room with me and I kept asking for her, but the nurses would only say that I was fine and she would come later. 

My memory of this is mostly emotional, and I’m missing context, but that feeling of being a small child alone in the hospital, asking for my mother, and being brushed off by adults who were in authority, remains one of my strongest associations with medicine in the United States.

The nurses weren’t the problem

Nurses are overworked and underpaid.

They shouldn’t be seen as the villains in my story.

My mother is a nurse’s aide, so I am very much aware and affected by the way our medical system abuses nurses. 

The fact is, though, that sometimes the effect of overworking nurses is that vulnerable patients don’t get adequate or compassionate care. 

When that happens, we patients are frequently gaslit. 

Our reality is denied or minimized. 

We’re told that everything is fine when it clearly isn’t, and then ignored when we continue to ask for help.

Gaslighting is frequently mentioned in discussions of domestic abuse. 

It’s becoming more common to talk about it in terms of workplace abuse. 

Medical gaslighting, though–the kind of gaslighting that occurs when someone who has institutional authority in the medical field doesn’t take a patient’s concerns or problems seriously–is still not really discussed as much. 

I hope that by sharing these experiences, I can illuminate the seriousness of medical gaslighting and the impact it has, especially on disabled and chronically ill patients.

More than an irregular menstrual cycle

When I was 19, homeless, and without medical insurance, I went to the ER reporting that I’d had heavy uterine bleeding every two weeks for about six months.

I had been in an abusive relationship for about a year, and I had been unable to go to the ER before this.

I also attributed the period problem to excessive stress from the abuse.

I didn’t realize that there was a serious medical issue until I had been separated from my ex-husband for several months and the bleeding didn’t stop.

During that ER visit, the doctor told me that every woman experiences irregular menstrual cycles and that it was perfectly normal for me to be bleeding this much.

She gave me a prescription for hormonal birth control, which I had to fill out of pocket.  

The birth-control got my cycles to calm down for a couple of months, but I couldn’t afford to keep taking it, and since the doctor had told me that what I was experiencing was “normal” I stopped filling the prescription.

Within a month or two, I was bleeding heavily again, but I ignored it until I started passing clots the size and shape of golf balls.

I went back to the ER and was diagnosed with PCOS.

I was told I had large fibroids on my uterus that really needed to be removed, but I couldn’t afford the surgery, so again I was given hormonal birth control, patted on the head, and sent on my way – this time with some additional advice to try to lose weight.

I was already on a restricted diet for other medical problems and had some seriously disordered eating patterns, but I focused on trying to lose weight because that was something in my control and the bleeding was obviously not. 

This didn’t work and caused a lot more problems. 

I still bled every time I stopped taking the birth control pills, and I still couldn’t afford them.

Eventually, I got insurance and was able to get a Primary Care Physician(PCP).

My PCP scheduled me for an emergency D & C.

She told me that by no means was my bleeding normal or something that every woman went through.

I almost died because some ill-informed ER doctor thought it was normal for me to pass giant clots out of my vagina.

My ‘untreatable’ migraines

I have experienced migraines since I was 13 years old.

A migraine for me is a weeklong event that starts off with visual auras, progresses to excruciating pain, and then leads to sound and light sensitivity, burning limbs, general weakness and fatigue, and some other miscellaneous symptoms.

I’m unsure whether the fatigue is caused by the length of the migraine or whether it’s caused by whatever neurological changes are happening during the migraine.

Either way, it takes about a week for the migraine to evacuate and then another week to a week and a half for me to fully recover from the migraine.

I have seen neurologists multiple times and been on several courses of both preventative and emergency breakthrough drugs to try to control the migraines.

They’ve gotten progressively worse as I’ve gotten older, and are now to the point that I get them every month unless I take a daily aspirin. 

This obviously has some counter-indications given my history of menstrual issues, but I’m in a position of having to choose between the least obtrusive options that have the highest likelihood of helping me function when there are no objectively good choices.

A daily low-dose aspirin seems like the least dangerous option to me. 

I actually started taking aspirin regularly for pain after a serious arm injury when I wasn’t getting adequate relief from the acetaminophen.

I realized I had gone several months without a migraine. 

High blood pressure runs in my family, so taking a daily aspirin is a possibility, but I didn’t want to continue taking it without a doctor’s advice.

This is a quality of life issue

I went back to my PCP.

She advised me to stop taking the aspirin, so I did, and immediately I got the migraines again.

They were so debilitating that I wasn’t able to function in my daily life.

My doctor advised me that the risk of taking the aspirin outweighed the benefit of reducing my migraine episodes to zero. 

Every other migraine treatment I have tried has failed, and most of them render me unconscious for days at a time, even if they aren’t supposed to have a side effect of excessive sleeping.

Fifteen years later, I’m still being told that my migraines can’t possibly be as bad as they are, but also that doctors don’t know what to do with them since they don’t respond to treatment.

I’m generally shrugged off because no one believes that I suffer with migraines 14 to 17 days a month and have no relief.  

In 2019, I was hospitalized for something unrelated, and while I was there I got a migraine.

The doctors put me on Imitrex, which made me incapable of doing anything but sleep for several days.

Then they took me off of it and tried me on another drug that had no effect. 

The doctor in charge of my case came to see me one evening as I was eating supper.

He said, “I have tried everything I can think of for your migraines, and I don’t know what to do with you.”

 I’d heard this before, and I’d been expecting it, but not over dinner.

“So I’m just going to have to suffer for the rest of my life?” I asked.

“I guess so. Sorry. Enjoy your supper.”

The fact that he wished me an enjoyable meal after informing me that I was going to have to suffer debilitating pain and neurological disturbances for the rest of my life reinforced what I already knew. 

He wasn’t taking seriously the level of pain and debilitation that these episodes caused me. 

My medical problems were once again shrugged off as “not that big of a deal.”

Later on I asked him if he could refer me to a specialist. 

He said he didn’t feel it would be worth it since I had seen specialists before without success.

He was right about that.

I have seen specialists, and all of them went through the same process of trying me on medications that didn’t work and then ultimately attributing my migraines to either my cerebral palsy or my weight, neither of which are likely to have any scientific bearing on intractable migraines. 

I decided it probably wasn’t worth the hassle, either to convince this doctor to give me a referral or to try another specialist.

I didn’t have the flu

During that same hospitalization, I was told that my unexplainable digestive symptoms were a flu virus and put on a liquid diet even though I had no fever and was ravenously hungry.

I ended up complaining the entire time that lack of food was going to make my headache symptoms worse.

They did. 

No one listened.  

I’ve had the flu before, and I have never in my life been hungry while I had it.

No one on my medical team would listen to me about how the flu usually manifests in my body or the fact that I did not think I was experiencing a flu virus. 

The digestive symptoms cleared up on their own, and nobody investigated any further. 

A few days later, I was scheduled for discharge, though I still had a migraine.

Medical Gaslighting is a severe issue, especially for multiply-marginalized people

These are just a few examples of medical gaslighting that I have experienced as a disabled, femme-presenting fat person. 

I could fill an entire book with stories of medical practitioners who have treated my most serious and often life-threatening symptoms as minor and unimportant.

Some of the behavior probably relates to whether or not I had insurance at the time of treatment, but all of it is affected by sexist, ableist, and fat-misic biases within our medical system. 

When I talk about this kind of treatment, it’s often suggested that I insist the doctor write in their notes that they are the one who refused further testing or treatment.

I assume this works for cishet, abled white folks, but for marginalized people – especially multiply marginalized folks like me — this usually results in the doctor noting that I am “difficult“ or noncompliant.

Either of those descriptions can seriously impact the quality of care I receive from other doctors in the future.

This creates a vicious cycle of gaslighting, mistreatment, poor diagnosis, and then more gaslighting.

 While it is important to treat a patient holistically and acknowledge considerations like a pre-existing disability or weight when those things are likely to be related to the symptoms, it’s equally or more important to actually treat the patient’s symptoms and provide relief.

Don’t just write the symptoms off as untreatable because the patient has a disability, is fat, is a person of color, or is otherwise marginalized. 

Medical treatment needs to be safe, both emotionally and physically, for everyone.

RA Stone is a multiply disabled, fat, queer witch who advocates for inclusivity and justice.  She focuses on disability education, discussions of abuse and abuse tactics, and making queer culture more inclusive of disabled people.  If you enjoy or benefit from her work, you can drop a tip here:

https://www.paypal.com/paypalme/artbyras