In 2010 I got really sick. I started getting headaches. At first I thought I was dehydrated because for a while it felt like a really bad hangover. But the headaches kept getting more and more frequent and worse and worse. I went to the doctor and he gave me a shot for pain reduction but it didn’t help. I started throwing up. Eventually I wound up in the ER, screaming in pain, and all they would do was give me some ibuprofen because they assumed I was trying to scam them for drugs. They just saw a woman making a fuss about pain that they couldn’t see or measure so they blew it off as a hustle. Women’s pain isn’t exactly something that merits a lot of response much of the time. My husband sat there angry and helpless while I pleaded for any kind of help until I passed out from the pain in the ER. Finally they got hold of my doctor who raced in to the ER himself and assured them this was serious and I was admitted to the hospital. Then the tests began. In the time I was there I had so many MRIs with contrast my breast milk turned green. Early in the process they did a lumbar puncture, which is a spinal tap, to check my intracranial pressure. They had never seen anything like it. The pressure in my head measured at 70 mm Hg. Normal adult pressure is 5-15. Intracranial pressure greater than 25 requires treatment. From 30-40 can cause serious damage to the brain. It’s a miracle I survived, let alone came out without permanent brain damage. They stuck a tube up my back to drain excess fluid and I was in the ICU for almost two weeks, and the hospital even longer. I was on serious pain killers almost the whole time and was in an out of coherency. I remember the pain, mostly. And a few visits from friends, family, and the hospital chaplain. While I was there, during all the tests, the doctors inadvertently discovered I have an a chiari malformation. That wasn’t the cause of my problems, but I have to be aware of if for the rest of my life. The ultimate diagnosis was viral meningitis. But I survived. And I came out relatively unscathed.
I’ve talked about my a chiari malformation before, but let me explain what it is. A Chiari malformation is a condition in which brain tissue extends into the spinal canal. It occurs when part of the skull is misshapen or smaller than is typical, pressing on the brain and forcing it downward. I literally have brain coming out the back of my skull. As you can guess, this has the potential to be problematic. And one of the things it can do, is cause pressure to build up in my head.
Now, it should come as no surprise to you that because of all of this, I am kind of sensitive and attentive to my head. I pay close attention to what is going on in my head. It’s my money-maker, after all. And there have been numerous times throughout the years when I have had problems. I have gone through periods where I have had headaches and dizzy spells, or headaches and blurry vision. And if I bent over or strained in any way it would feel like my head was going to explode. Strain in any way would give me a headache and often I would feel nauseous. Look, I recognized the symptoms of high intracranial pressure. And I recognized what that kind of headache felt like. So, of course, I head to the doctor, who sent me to the neurologist. And every neurologist I saw blew me off. They diagnosed me with migraines and that was the end of it. I pleaded with them – I told them that these were not migraines and the symptoms were nothing like migraines and would they please take me seriously, and they would nod and write down migraines anyway and that was the end of it. Eventually the symptoms would resolve after a while and I just had to hope everything was okay and they wouldn’t come back.
A while back the headaches came back. I hoped they would resolve themselves as they had in the past, because I didn’t want to go to a neurologist just to be told I had migraines and get sent away, again. But they didn’t. And they have been getting progressively worse, as has the blurry vision and the nausea. So eventually I went to the doctor, who sent me to a neurologist. He recommended somebody I had seen before, but this time I found my own. The first time I visited her there was an immediate difference. She took it seriously when I told her my headaches were worse when I laid down. She noted with concern that my headaches lacked all the hallmarks of migraines. She ordered MRIs, like other neurologists had in the past, but also asked to see medical records from my time in the hospital and talked me for over an hour about my symptoms and my history instead of just sending me on my way.
The MRI came back showing that the flow around my head was fine. There was, thank heavens, no sign of a tumor or anything like that, and no sign of swelling or problems with the veins. For the most part, it looked good. This is when past neurologists have blown me off. But she stopped and took a beat. She said, okay, let’s talk through this. We need to figure this out. Because of your malformation, it shows moderate crowding in your head, so that could be a problem. The fact that you are having vision problems and it is worse when you are laying down indicates that this really could be an intracranial pressure issue. So we need to get to the bottom of this.
And that’s when things got a little scary. She referred me to a neurosurgeon for a consultation. This coming week I meet with him to discuss whether these issues are because of my a chiari malformation or if they are more likely something like benign intracranial hypertension. If it’s because of my malformation, then we’re talking surgery. If it’s not, then I’ll probably get an lp and we’ll go from there to discuss whether things need to be treated medically or with a procedure of some kind.
All of this is very frightening and anxiety inducing. But at the same time it is such a RELIEF to finally be taken seriously. And I don’t mean to be stereotypical, but there is one notable different between this neurosurgeon and the last few: this neurosurgeon is a woman. But there are studies to back up this stereotype. According to a study out of Harvard in 2016, female doctors have verifiably better outcomes that male doctors, at least in the care of some demographics. This doctor didn’t see me as just a lady complaining about her head. She saw me as a person with symptoms that indicated a problem.
My story is not unique. The internet is replete with stories of women who went to doctors with complaints of pain or medical problems and were told it was nothing, only to end up with very serious medical problems, many of which could have been avoided, because the medical profession ignored them. It is a well-known phenomenon in the field of medicine that women’s pain and women’s symptoms are often ignored or not taken seriously. When women go to the doctor they constantly run the risk or being ignored, blown off, or misdiagnosed because of rampant gender bias in the medical community.
According to Zawn Villines,
Stereotypes about gender affect how doctors treat illnesses and approach their patients. For example, a 2018 study found that doctors often view men with chronic pain as “brave” or “stoic,” but view women with chronic pain as “emotional” or “hysterical.”
The study also found that doctors were more likely to treat women’s pain as a product of a mental health condition, rather than a physical condition.
A 2018 survey of physicians and dentists arrived at similar conclusions: Many of these healthcare professionals believed that women exaggerate their pain. This was true even though 40% of the participants were women.
In other words, women who complain about pain are just crazy women or hysterical. Women can’t be trusted to assess their pain or their symptoms because women’s mental stability can’t be trusted.
Emily Paulsen writes,
A survey conducted in early 2019 by TODAY found that more than one-half of women, compared with one-third of men, believe gender discrimination in patient care is a serious problem. One in five women say they have felt that a health care provider has ignored or dismissed their symptoms, and 17% say they feel they have been treated differently because of their gender—compared with 14% and 6% of men, respectively.
Studies show that women’s perceptions of gender bias are correct. Compared with male patients, women who present with the same condition may not receive the same evidence-based care. In several key areas, such as cardiac care and pain management, women may get different treatment, leading to poorer outcomes.
Similarly, Crystal Raypole reports,
Some doctors and mental health professionals still harbor skepticism around female physical and emotional distress, often assuming that women exaggerate their symptoms or make them up entirely.
For example, in a 2015 studyTrusted Source involving 18,618 people just diagnosed with cancer, researchers found evidence to suggest females often waited longer to receive a diagnosis after their symptoms first appeared.
And there’s more:
As recently as 2021, evidence continues to suggest that doctors still fail to take pain reported by females seriously. Doctors often prescribe therapy instead of the pain medication they often prescribe to males.
There’s also the persistent stigma surrounding female reproductive health concerns.
Because of this stigma, plus a general lack of knowledge of the menstrual cycle — a natural process that’s entirely necessary for human life — you’ll find more than a few news stories about doctors dismissing severe pelvic pain as cramps and recommending over-the-counter pain medication.
Another major source of bias in healthcare? Body size.
Certainly, weight bias can affect any person, but evidenceTrusted Source suggests females experience it more often.
Healthcare professionals sometimes prescribe weight loss to women with larger bodies instead of taking time to explore possible causes of their symptoms. People with obesity also get preventive gynecological and breast cancer screenings at lower ratesTrusted Source than people with a “normal” body mass index (BMI).
Many Women of Color face additional racial bias when seeking medical treatment.
Healthcare professionals might, for example:
- make prejudiced assumptions about diet and lifestyle
- subscribe to the long-standing and entirely false belief that Black people feel less pain
- recommend fewer preventive screenings
- prescribe less pain medication, even for children in emergency situationsTrusted Source
Even more barriers exist for Women of Color from lower income households, who often lack access to healthcare and prenatal care.
Regardless of intention, healthcare in the United States often perpetuates racism. People of Color, especially Women of Color, often receive lower quality care. As a result of systemic racism, these disparities remain even when doctors honestly attempt to provide equal care to all patients.
I’m not going to lie, I’m really anxious about this appointment next week. But to be honest, the bad days are getting worse and it’s getting harder to get much accomplished these days. I NEED to get this figured out. But the possible outcomes of this appointment are pretty scary. I’ve been experiencing a lot of anxiety about it, and it’s been pretty depressing being incapacitated this way.
In fact, one thing I’ve learned is that when you are in a situation like this, waiting for results or to see a specialist, the anxiety can be as bad as the symptoms in some ways. It messes with your emotions and your ability to work and function in general. So remember that when your friends are ill.
But at the same time, I am so thankful to have a doctor who believed me. Yes, it is anxiety-inducing to have an appointment with a neurosurgeon, but how much worse would it be to be dealing with all this completely one my own, with no medical help?
Women need to be listened to. Women need to be taken seriously. Ladies, if your doctor blows you off, find another doctor. You matter. You know when something is wrong. Don’t let somebody treat you like you’re just crazy.
Look, I got real personal today. And I hope that didn’t make you too uncomfortable. But for women this is a very personal thing. There can be a million studies on gender bias in the medical field, and that is great for showing it is a wide-spread problem, but what matters is YOUR story of medical mistreatment. If you’re a man and you’re not familiar with this, ask the women in your life about it. See if they have any thoughts about how they are treated by doctors. It may surprise you.