Sensitivity to light, sounds, and sometimes smells, nausea, vomiting, and sometimes hours spent in darkened rooms. If you suffer from migraines then you're all too familiar with these symptoms which may affect you infrequently or as often as several times each week.
Migraines affect men, women and children, but not equally. Migraines are three times more common among women than men – but it's not just the numbers that are different based on gender, it's also how women are perceived and treated.
Joining me in this episode is Joanna Kempner, PhD., an associate professor in the Department of Sociology at Rutgers University, doing important research on gender politics and pain – specifically, the striking difference between how men and women with migraines are viewed by doctors.
In this episode we explore the emergence of the idea of a migraine personality in the mid-20th century that saw migraines in men as an affliction of high-pressured intellectuals, but which saw women with migraines as uptight neurotics and hysterics. And how this historical concept created a disparity in pain treatment for women – especially for women of color in the United States – that persists today.
We also talk about the societal factors that have led many women to feel guilty for speaking up about their pain, whether it be chronic pain caused by a condition like migraine or pain after childbirth, for example. We share the ways that the stigma of pain affects pain research and the implications that this has for the current and future treatment of women's pain.
Listen to learn why these disparities in pain treatment still exist and find out how we can avoid them in our own lives.
- The historical context for the diagnosis previously called ‘hysteria'
- The stigma women who have migraines might experience
- How people who suffer from migraines take on stereotypes
- What happens when a migraine is not recognized as a disability
- How the pharmaceutical industry plays on women's guilt
- Why the medical community so often disbelieve women
- The patient-blaming language of medication overuse
- The irrationality of the opioid crisis
- How and why women of color women remain invisible in medical research and have their pain treated differently
Links and Resources
- For natural approaches to preventing and treating migraine, listen to Herbs and Supplements for Migraine Prevention. or read 6 Steps to Prevent Migraine Naturally
- For help with hormonal migraines specifically, head over here.
- Listen to Trust Us When We Say We’re Sick
- Get your copy of Not Tonight: Migraine and the Politics of Gender and Health by Dr. Joanna Kempner
On Health Episode Transcript: Do You Have a Migraine Personality?
This conversation has been edited for clarity and length.
Aviva: My guest today is Joanna Kempner, the author of a compelling book called “Not Tonight: Migraine and the Politics of Gender and Health”.
Joanna is an associate professor in the Department of Sociology at Rutgers, where she writes, researches, and speaks about medicine, science, politics, gender, and the body. She's currently writing a book about citizen scientists who use psychedelic medicines to treat pain. Recently, many of these citizen science projects have gained the attention of policy makers and academics, and are paving the way for a growing number of FDA-approved clinical trials on psychedelics, cannabi, and MDMA.
Joanna received her PhD from Penn's Department of Sociology. She worked as a research associate at the Center for Health and Wellbeing at Princeton University, and served as a post-doctoral fellow in the Robert Wood Johnson Scholars in Health Policy Research Program at the University of Michigan. She's also a recipient of Rutgers Board of Trustees research fellowship for scholarly excellence, which is one of Rutgers's highest honors.
Joanna, thank you for the important work you're doing in gender, politics and pain, and thank you so much for being here with me today.
Joanna: Thank you – it's a real pleasure. Thanks for having me on.
Aviva: Are you kidding? I love talking with smart women who are doing important work.
Joanna: I'm so happy to be talking to you – another smart woman.
Aviva: In your book you discuss something that really grabbed my attention: the idea of the migraine personality. For listeners who are suffering with migraines, you are no stranger to the pain; the vomiting; the hours lying in the dark, just wishing the migraine would end. It's an incredibly common chronic problem that affects nearly 40 million Americans who are largely women (although men do suffer too).
In your book, you talk about the migraine personality. I found this particularly interesting because it relates to research that I've done in the area of women's health and the historical designation of hysteria. I'm sure you're familiar with the concept of hysteria and how it has evolved. Can you talk about the migraine personality?
Joanna: Sure. At least in my research, so many people have migraines that a lot of people aren't very bothered by their migraine. For example, my husband has migraines; he has maybe one attack a year. It hurts, but he gets over it. There are a lot of people who live with migraines, and for them it’s not a big deal. But then there are people who are really disabled with their migraine. What I heard from them in my research is that they often feel like other people see them as nuts; as stressed as pill poppers; as people who can't cope with life. The migraine personality was a historical designation – a historical description that emerged in the early to mid 20th century, which was the height of psychosomatic medicine.
This idea that people with migraine are a little bit neurotic or a little bit hysterical can be traced back into history. It comes from a neurologist named Harold G. Wolff, who was super important not just in headache medicine, but in medicine more generally; he was a very, very influential neurologist. He really believed migraine pain (which he himself had) was real. He thought migraines came from the constriction and vasodilation of cranial vessels, but he didn't think that's what caused the migraine. What he thought caused migraine was people's personalities. He made the case that people who had migraines had issues dealing with the stress of their environment. Now, like I said, Harold Wolf had a migraine. He also had a practice in the upper East side of New York, so most of his patients were wealthy, and he served a lot of men.
Aviva: Wealthy and white.
Joanna: Wealthy and white – yes. This is important to keep in mind. Originally, when he talked about the migraine personality, he was actually talking about men. He described migraine personalities as people who are ambitious, successful, perfectionist and efficient; people who were really good workers and really just needed to take a break. He prescribed these men a squash break – every man you can imagine on Wall Street should take a squash break in the afternoon, just as he did.
Aviva: Not talking about the vegetable here – we're talking about hitting the courts.
Joanna: Yeah. He said that would treat migraine. He also thought that men with migraines may have a problem with sex. We all know that. The title of my book says “Not Tonight”. There's the old joke about migraine as having something to do with avoidance of sex. He thought men with migraine might have a problem with sex, but he didn't think the problem was with them – he thought that maybe their wives had a problem giving them sex. He thought they needed to extract more sex from their wives. Now, when the migraine personality was applied to women, it sounded a lot different. The migraine personality for female patients was still described as uptight. But if you think about what middle class women looked like in the 1940s and the 1950s, they were housewives. Those women were uptight about their housework. These were women that were described as needing their house to be too clean; women who would never go to bed unless their dishes were done and their house was just so. They were also described as having sex problems, but for them it was their own problem. They were frigid…
Aviva: They weren't giving it. So either way, the men won out on this.
Joanna: I think so many women are accustomed to the idea that no matter which way you cut it, it was women's fault, so some of the advice that women with a migraine personality were given were things like: if they were concerned or anxious about their marriage, they were advised to just relax and accept their husbands. Doctors would point out that they had to be married to an angel who would put up with their illnesses, so they should hold onto that man as tightly as they could. Men and women were treated very, very differently, even though they were thought to have the same kind of personality quirk. As time goes on, you can see how that migraine personality takes hold and becomes something that's associated with women; they become the prototypical migraine patient. The prototype is the neurotic and hysterical woman who freaks out about absolutely everything.
Aviva: The sad part that I've seen in my own medical practice is that we know that these gender biases are happening – we hear it, we see it. When you tell this story, it's obvious that there's something wrong. Yet I can't even tell you how many women have apologized for how they feel, as if they’ve internalized the idea that they are doing something wrong, or that there is something wrong with them. They apologize for being sick or missing work; for having to shut things down and go into a dark room. I don't know anybody who actually wants a migraine, yet there's this sort of apologetic internalization that's happened. I think that part of it comes from something you’ve talked about as well: how women feel like people aren't taking them seriously. It is, on some level, an invisible illness. How do you feel like women experience this not being taken seriously, and why do you think this has happened?
Joanna: The first thing I want to say is that we have done studies looking at migraine stigma and how it manifests itself. We have found that people with migraine (men and women both) internalize the stigma of migraine in a really profound way. It's not as if they’re told they aren’t good enough, or that they should be doing things that they're not doing, and just brush it off; people with migraines absorb and internalize those ideas at a very high rate. We compared some of those stigma numbers to people who have epilepsy. The reason we chose epilepsy is because historically, it has been very highly stigmatized. At least in the research literature, it has been a kind of standard for stigma, because epilepsy was associated with…
Aviva: Possession; demonic possession.
Joanna: For people with episodic migraines – people who were having fewer than 15 headache days a month – the level of internalized stigma was about the same for people with chronic migraines as it is for people with epilepsy. In people who are having more than 15 headache days per month, the levels of internalized stigma were way higher – higher than with epilepsy. We were astounded by that. There is something going on. What you're seeing in your clinical population is something that we've assessed and measured. People with migraine generally take on those stereotypes, and believe them.
Aviva: Why do you think that happens?
Joanna: Well, there has not yet been a public discussion that legitimates the disability associated with migraine. As a result, even the notion that migraine is a disabling disease is not something that we've really had a public discussion about. Migraine is covered under the Americans with Disability Act; if you have a migraine that requires accommodation in your workplace, you are legally able to ask your employer to change out the light bulbs if the fluorescent lights are bothering you. You're able to make requests like that, but I don't think that occurs to many people with migraine because we haven't even had a public discourse that allows people with migraine to think about themselves as having a disability, even though it is an extraordinarily disabling disease. All we have in our public discourse is pharmaceutical ads that really prey on women's guilt for having migraines. What you see are images of women not taking care of their children because they're in pain. Pharmaceutical executives told me that's what they do: they told me that in focus groups, women told them that they feel guilty when they have migraines and it prevents them from doing things around the house. The pharmaceutical industry has exploited that for a long time.
Aviva: And continues to do so in so many areas of women's health. To see it, all you have to do is turn on primetime television that is targeted toward programs that are targeted toward women. Between autoimmune disease and migraine, it seems like this way of portraying women – as unable to do their 1950s role of housewife and mother – is still playing out… then they take the drug. Of course, the side effects of some of these drugs are like, “don't take this if you have a history of tuberculosis because the risk could be death”. You hear all of that, but yet you see this perfectly happy woman rolling around in the grass with her kids, and as a woman I think it's very hard to not internalize that.
Joanna: Sure. What goes unsaid is that chronic pain causes problems with memory. Those medications have side effects that can last the whole day. They can make you groggy and tired all day. You're not rolling around in the grass, right? The medications don't make you feel great.
Aviva: It's really true.
Joanna: Women have been socialized to feel guilty about these things, so when you talk to your patients, women with migraines feel terrible that they're not doing the things that they're supposed to do. They haven't been taught that migraine is something that is actually serious and disabling. The message that they've been given is that migraine is easy to treat, when actually it isn't that easy to treat for a lot of people.
Aviva: As part of your research for this particular book, and for your work in general, you attended a lot of professional conferences – headache conferences. You've talked with top specialists and advocates, you’ve looked at online blogs. You've really done your homework on this. As you said, you've done research into how the marketing done by pharmaceutical companies plays a role in how we see women with migraines. What have you found are the attitudes in individuals with migraine? What are some of the things that women hear from family members or colleagues about migraine?
Joanna: I think the biggest issue for people with migraine is that they feel like they're not believed, and they feel like their experiences are belittled. When they’re told that they don’t have pain, they feel like they’re just complaining all the time. Because of this, people with migraines try to put on a happy face to get through the day. The public perception of migraine is that it's an everyday ache and pain that somebody should live with. Most people don't understand that, if you are on the severe end of the migraine spectrum, you can be very, very disabled. There are people with migraines who never really get out of bed. Even having a migraine once a week can really harm your ability to work. Not everybody understands that.
What I hear from people with migraines is that they get tired and feel diminished. When other people give them what I think is well-meaning advice, it comes off as condescending. When others suggest that they lower their stress or get a hobby to take their mind off their migraine, it makes it sound like they believe the migraine is “in your head”. When other people say, “You know what? I have some Tylenol in my bag” – no, that's not going to help the situation. I think it's about people not understanding what migraine is, not taking it seriously, and not thinking of it as a real disease.
Aviva: It's like someone having a menstrual cramp once in a while, and comparing their pain to someone with endometriosis. It's really apples and oranges. Stress headaches and tension headaches (or the occasional headache because you skipped eating, got a little dehydrated, or had a bad night's sleep) are a completely different experience than the migraine headache and the migraine physiology. I think that people are often weighing their own experience of the occasional headache against this, and saying, “Well, I mean I can cope with it. I don't have to miss work because of that”. What's this about?
Joanna: Exactly. The other side of it is people also asking, “Well, did you drink enough water? What did you do to have this migraine attack?” Here’s the thing: maybe it was triggered by dehydration, and maybe it wasn't, but what you probably did was just be genetically predisposed to having migraine. Very often, there's a language of blame that makes people feel like they’re being put under a microscope. I think that's part of why you hear the people in your practice apologize so much.
Aviva: It's across the board with women's health conditions; women have been blamed for them. At one point I was working on my book “Adrenal Thyroid Revolution”, and an editor was looking at it. I had said something in the introduction about how women are told this is all in their heads. and she edited it. She said, “I think you should say women feel that they're being told it's all in their heads, or think that they're being told”. I said, “No, they actually are being told this”, and if I write that they think or feel it, I'm contributing to them not being believed. This is a really complex time we're living in, as we just saw during the judicial hearings for Brett Kavanaugh. It is a challenging time: women are finally saying “I'm not being heard and I'm not being believed”, but this is happening for women every single day in medical offices. I couldn't even begin to tell you how many stories I hear everywhere I go, every day on my social media, of women feeling unseen, unheard, dismissed, and not believed by medical practitioners. I'm sure you're hearing this in your research.
Joanna: Absolutely. It's embedded directly into medical language. One thing that some of your listeners may have been diagnosed with is medication overuse headache, and that language drives me up a wall. The idea of medication overuse headache is that the medication one takes for migraine is the cause of the migraine. The definition of medication overuse inherently blames the patient, stating that the patient is overusing the medicine. Personally, I don't see how that could possibly be the patient’s fault; the fault is in the technology or the medicine. It's either the fault of the medicine or it's the fault of…
Aviva: The physician or the prescriber.
Joanna: Yes. I hesitate to make it the fault of the prescriber, because I don't want to create a situation where prescribers or insurers aren't allowing enough medication for people in pain. However, I do think that if a drug worked well, it would not create a situation in which it was exacerbating the very problem it was treating.
Aviva: There's so much rich content here.
As I'm working on this hormone book, I’ve been reading about women suffering from invisible illness – everything from PMs to endometriosis – and experiencing a lot of that same kind of dismissal; being told that they should be able to cope better. In its own way, I think there is also a lot of blame in the new iteration of the wellness movement for women; it unwittingly blames women. If only you just ate well enough or ate clean enough; if only you just detoxed enough, did enough yoga or enough meditation… that would fix the issue.
What’s also fascinating is that the self-help movement in and of itself almost allows agencies – like any number of our government agencies such the EPA, the FDA, and medical associations – to not have to make cultural and social shifts. It puts the blame on the patient, and the burden of having to make the shift to make their life better.
Joanna: It's absolutely right, and I'd be happy to address it.
Aviva: Please do – I'm so curious to hear what your thoughts are on this.
Joanna: The word we use to discuss that in sociology is “neoliberal politics”. I recommend a new book called “Better Safe Than Sorry” by Nora MacKendrick, who is one of my colleagues. It’s about exactly this, and it's really wonderful. She studies women who are trying to keep their families safe by purchasing non-toxic BPA free plastics and organic vegetables, in part by participating in the wellness movement. She is one of these women too, but…
Aviva: I am too.
Joanna: One of the things she's arguing is that these behaviors will not protect our families. They're not going to protect us, because the contaminants are all over our houses; they’re everywhere, deeply embedded in our environments. We cannot create a protective little barrier in our homes by buying eco-friendly cleaners. There are studies demonstrating that the only way we can protect our families is by creating structural changes – legislative changes in the government.
Aviva: It's complex; I think it's both. I interviewed Philip Landrigan not too long ago – he's the guy who literally got the lead out of American gasoline and American paint. He’s a pediatric environmental scientist and MD, and we talked about how we have to do the things that we can in our own homes. We've looked at studies, for example, where you take kids off of a conventionally grown fruit and vegetable diet and you put them on an organic diet; in a few days alone, they wash out a lot of the environmental contaminants. But you're right – we can only go so far. The reality is that, unless we’re dedicating our entire day and night to being social activists, the only thing we can do is make the little changes we can make, and hope that consumer demand starts to shift policies. We're seeing a huge schism right now: consumers want to eat more healthily and organically, while our EPA is basically being decimated. I still encourage people to do the little things, but ultimately we are having to take on the responsibilities of the agencies that are supposed to be protecting.
Joanna: I agree. I do think it's nihilistic to say, “Well, these things are out of my control, so I'm not going to do them” or “ I'm not going to recycle, because how is it making a broader impact?”
Joanna: On the other hand, as people of privilege, we cannot imagine that our own individual actions are going to protect our families and our children; we have to take steps to ensure that our federal government is also putting these policies into place. It hasn’t been just Republicans…
Aviva: No, this has been going on.
Joanna: Democrats have been doing this too, with their deregulation and neoliberal policies that put more and more emphasis on individuals – put more responsibility on individuals to be taking these actions.
Aviva: We should read the labels instead of the precautionary principle, which is, if we need to be reading the labels, it shouldn't be in there.
Joanna: I think it's a preposterous task for individuals to do. We can't do that with all of our consumer purchases; it's not a feasible solution.
Aviva: Not enough. It's like a drop in a bucket. It's a drop in the ocean.
Joanna: How am I supposed to furnish my home? And make sure that everything that comes into my house…
Aviva: Doesn't have flame retardant…
Joanna: Exactly. How am I to do that? Without EPA regulations on mileage and gas usage in cars, there isn't the pressure on companies to make sure that cars are gas efficient. The government needs to be enforcing these things – otherwise, it makes individual choices too hard.
Aviva: It puts a lot of burden on people. I do believe that people should be the CEO of their own health; it's nice to be responsible and take care of ourselves. I think the citizen scientist phenomenon is incredibly powerful. It’s not new – we saw the popular health movement in the 1800s, when women realized they had to do more for their own health and community.
I didn’t realize that you were researching pain, cannabis, and psychedelics so extensively until I read your bio. During the time that I was in medical school, there was a really big emphasis on making sure that people had enough pain medication. The idea was that, if they weren't predisposed to addiction, both children and adults could take opioids for pretty much any kind of pain relief. They could take an opioid for strep throat, for a broken arm, et cetera. It was believed that once the pain was gone, the patient wouldn't need the opioid anymore. There are a lot of political reasons, as you know, for over-prescribing, and the idea of medicating pain has contributed to the opioid crisis we're in right now.
I'm super fascinated with your work around psychedelics, cannabis and pain, and I recently read two different articles that came to me through Medscape. One is about how the life expectancy of this current generation has actually gone down significantly compared to the past several decades, largely because of the opioid crisis. It states that we've had a 67% increase in sexually transmitted infections, including syphilis and gonorrhea, which can also be attributed to the opioid crisis – people selling sex for drugs. Where does this all come into your work? I'm curious how you got tapped into psychedelics, cannabis, et cetera, and how they relate to your migraine research.
Joanna: I think the opioid crisis is fascinating. The US government has essentially regulated research on cannabis and psychedelic drugs out of existence, while at the same time promoting medical use of opioids, which are, as we now know, incredibly dangerous. The flip side is that cannabis and psychedelic drugs are not particularly dangerous; they're certainly not as toxic as opioids, by any means.
Aviva: I did a cannabis monograph; part of it's been published, and part of it is in process. There's never been a report of a toxicity death directly related to cannabis. It's really fascinating.
Joanna: I would check on this, but I believe that any deaths related to LSD and psilocybin are contested. They're very few, and they're contested because they're linked to other particular issues. I can’t remember how many thousand times the size of a recreational dose you would have to take for a psychedelic to be fatal.
Aviva: It’s very high.
Joanna: It's very, very high. Now, there are risks related to all of these drugs, but the safety profile looks much better than most of the drugs that we take for pain. There is an irrationality in the way that the US government, the FDA, and the Drug Enforcement Agency have decided to regulate clinical research on medications. I find that fascinating. The way I came into this is through my research on headache disorders: I included some research I did into a relatively rare neurological disease called cluster headache, which is a much more severe kind of pain disorder than migraine, but shares some of its neurological features.
Aviva:: It’s the one form of headache that men are more likely to have than women.
Joanna: That’s why I included it in my book, since I was so focused on gender. As I was doing that research, I learned about a group of people with cluster headache who were experimenting with psychedelics – particularly psilocybin – to treat their cluster headache. There are very few good treatments for cluster headache; it has been virtually ignored in medical research, and has received almost no federal funding for its studies. Also, I think the average time to diagnosis for cluster headache is about six years. Cluster headache is so painful – people who have been shot say that it's more painful than a gunshot; people say it's more painful than an anesthetized birth.
People with cluster headaches get attacks 8 to 10 times a day – so if you can imagine being shot with a gun 8 to 10 times a day, that's what they're experiencing. They have very, very few therapies; out of desperation, they were trying magic mushrooms, and through an experimental protocol that they developed online, many people have experienced relief. They reached out to academic researchers, and their protocol is now in clinical trials at Yale. I was very fascinated by that story, and decided to pursue it; that's how I got involved with cluster headache patients using psilocybin. It seems to mirror how many other clinical trials on psychedelics have happened. It’s certainly a very similar story, for example, to when mothers of children with intractable epilepsy were able to develop CBD oil, and now Epidiolex (the prescription for CBD oil) is FDA approved. I think that was completely driven by citizen science.
Aviva: Citizen science can do a lot. It’s an overly repeated cliche, but it’s still accurate: Margaret Meads said “Never doubt what a small group of individuals can do”. It's true; I think we forget how much power we potentially have.
Joanna: One of the things that I am arguing in this work is that it's particularly important in areas of science where the government has regulated what scientists in institutions can do. Researchers have been interested in studying psychedelics for a long time; they've been interested in studying cannabis for a long time, and they haven't been able to. But people – mothers working in their garages to create medications – have been able to do it. Citizen scientists have been able to do it in their homes.
Aviva: One of the pieces that you talk about is how stigma around migraines and stigma around pain affects research. Can you talk about that?
Joanna: Absolutely. We tend to think about stigma as something that just happens, something that only affects an individual. Stigma can also be institutionalized, and it can be made structural. We have very few headache specialists in this country. There are about 500 to 520 board certified headache specialists in a country that has almost 40 million people with migraine – not to mention all the other headache disorders.
Aviva: A persistent headache is one of the most frequent reasons people go to a doctor's office.
Joanna: It's the number one reason to go see a neurologist. We know from studies that neurologists really dislike seeing migraine patients in general. Not always, so don't feel anxious about going to see your neurologist. Neurologists are not terribly fond of seeing migraine patients; one study showed that a high proportion of neurologists felt that headache patients were more emotionally draining than their other patients, and had more psychiatric problems than their other patients. A quarter of those surveyed said that they were more likely to be motivated to maintain their disability than their other patients. There was clearly something about the stigma surrounding migraine that neurologists themselves absorbed. One of the things that headache advocates have been trying to do is to convince neurologists that it is worthwhile to treat people with migraine. We also see the stigma all the way up in federal policy, because migraine research is really underfunded compared to the burden it presents to the public.
The National Institute of Health, which is the largest funder of biomedicine in the world, allocates between 18 to 24 million dollars a year to migraine research. That might sound like a lot, but it is actually a tiny bit of money relative to the amount that similar diseases are receiving. I believe that this is also about gender. This is about policy makers not thinking that migraine is important or serious enough to fund the research, no matter what the objective data says.
Aviva: Joanne, when you and I were writing back and forth about gender, one of the things that you shared with me is that this is a combined gender, race, and socioeconomic issue that predominantly impacts women of color – particularly African American women, and women with lower socioeconomic means. Can you talk about that, and also how that shapes beliefs and research agendas?
Joanna: One of the things we know from the little research that exists is that black women really aren't heard or believed when it comes to reporting pain. Serena Williams came out about her pregnancy – here she is, an expert in her own body and her own condition. She has all the resources in the world, and even she could not get the doctors to listen to her.
Aviva: In a life and death situation.
Aviva: For those of you who don't know, Serena Williams has a clotting disorder. Immediately after she had her baby, she reported some difficulty breathing and chest pain – symptoms consistent with pulmonary embolism, which is one of the leading causes of death for women after birth in hospitals in the US. She was told that she just needed more pain medication after her C-section, or just needed to relax. She essentially had to stamp her Amazonian foot, metaphorically, and say “This is really serious”. It turned out that it could have been fatal.
Joanna: She drew attention to the problems that black women face in being taken seriously in clinical encounters, something that we know historically black women have never been given. Let me just step back and say, if white women have always been treated as fragile, neurotic, and likely to make too much of their pain, black women have been treated in a very different way. Black women have been treated as impervious to pain, even when they complain about pain. They have been treated as very, very tough and able to survive all different kinds of suffering.
Aviva: I'm reading Wednesday Martin's book right now, “Untrue”. She has a section on the stereotypes of black women that have extended down from slavery. There’s this idea of “It doesn't really matter, because they can do anything, or you can do anything to these women and they can survive it”. It's a deeply ingrained, horrible system that keeps women suffering.
Joanna: Absolutely. The whole notion of race – that African Americans are different from white people – originates from biological theories about nervous systems. The idea was that black people couldn't possibly feel pain in the same way that white people felt it. Racial science was created to justify a system of slavery, because you couldn't have Africans tending your cotton fields in the hot sun and being whipped if you believed that they felt pain the same way that white people felt it. J. Marion Sims, the famous obstetrician, was studying fistulas on unanesthetized women – he was doing surgery on them.
Aviva: When I was in medical school, we had an OBGYN lecture, and Sims was almost deified for the discoveries he made. It was a little bit like listening to somebody say “Let's look at all the wonderful things that Dr. Mengele figured out”. It was so horrifying. I know one story of a young slave who he had performed surgery on over 14 times, each time unanesthetized – and these were gynecologic surgeries.
Joanna: It's funny to think about how those notions translate into the clinic today – I think they do in a couple of different ways. One way is that black women are still invisible in medical research. Even though the federal government dictates that we have to have diversity in clinical trials, I think that a lot of clinicians – particularly in headache medicine – just don't see that many black patients. There are only 500 or so headache specialists, and the barriers to get to that level of care are so high. Also, I believe that the black patients who have migraine pain are being seen in the ER and in public health clinics, so when black women in pain come into the clinic, they have to face not just the stigma of pain, but also the moral stigma that comes along with being in the welfare system.
Aviva: Yes. There’s this idea of the welfare mother who would actually rather have the reinforced disability than the treatment for their headaches.
Joanna: Exactly – and the stigma that they are drug seeking. There's also this other notion that comes from the idea that black women can handle more burdens than white women can. If a poor black woman comes into a clinic and she's complaining about pain in a really perverse way, there is an implicit bias that black people already suffer so much that they can handle more pain than white people can. Black people – we have so much data on this – are systematically provided with less medication (including pain medication) than white people are.
Aviva: I saw this all the time in the hospital. One particular young woman comes to mind: she was in her early twenties, and she had cystic fibrosis with frequent attacks. These attacks deprive your body of oxygen, and tissue being deprived of oxygen is one of the most severe types of pain that humans can experience. She would have these absolutely excruciating pain attacks. Of course, people who suffer from sickle cell anemia are also black. She knew exactly how much morphine she needed to treat her pain, and that she needed IV morphine; this was well documented in her chart. I remember the nurses rolling their eyes and gossiping at the nurse's station about how she was drug seeking, and me having to say, one – inappropriate conversation, and two – she's not drug seeking – she has sickle cell anemia.
Joanna: We have a lot of evidence around the undertreatment of sickle cell. We also have evidence that, even for something like a broken arm, there is a big disparity around how white people are treated and how black people are treated when it comes to pain.
Aviva: How women are treated. Men also, but women have to wait on average significantly longer to receive treatment for pain than men do in an emergency department, or even in a medical clinic setting.
Joanna: Yes, that's true. One of the things that I think is a terrible myth that I would like to combat is the notion that these disparities have something to do with pain being invisible – because we know that sickle cell is not invisible.
Aviva: No, it's not.
Joanna: We don't feel that person's pain, but we know it's excruciating. Why are there disparities in pain treatment? I don't think it is truly about pain being invisible – I think it's about how much providers are willing to trust what the patient says. I want to dispel the notion that it's just about the invisibility of pain, and start focusing on empathy and trust. I also want to expand the idea that we should trust women and believe women – not just about sexual assault and sexual harassment (although we should believe women there too), but about pain.
Aviva: I can't agree with you more; I call it “hashtag medicine”. Even with endometriosis – the average time it takes to diagnose it in the United States is around 9.3 years. These are women who are suffering with excruciating pain. I've had the proverbial suburban soccer mom living on narcotics who's come to see me as a patient because she's escalating her narcotics use due to underdiagnosed and undertreated endometriosis pain. It goes along with the myth that African-American women can deal with more pain, the belief that somehow women's gynecologic symptoms are inherently painful, and that women were made to suffer, so we should just buck up and deal with it.
Joanna: I couldn't agree more. I also think it’s fascinating how white women's perceived fragility and black women's perceived uber strength both have a very similar result: neither group gets treated. No matter what, women are blamed. No matter what, women are not getting the treatment that they need.
Aviva: I read another fascinating study about pain that I think has just come out in the last couple of years. You may have encountered it. It was looking at women with some form of chronic pain, how they appeared physically in the doctor's office, and how that led to whether or not their pain was perceived by the practitioners. For example, if a woman dressed too nicely – if she had the wherewithal to put herself together in a physically appealing way – then she clearly felt fine and didn't have the level of pain that she was claiming to have. Conversely, if a woman was disheveled or just didn't have the energy to put herself together – or if that’s not even her style – and went to the doctor's office, then she was perceived as trying to appear like she was in need of pain medication. You could not win. This study found that women are having to manipulate their appearance based on how they perceive that their doctor will perceive them. It's insane.
Joanna: I would love to see that study.
Aviva: I’ll send you a copy of it.
Joanna: Thank you. Back when I was going to headache meetings all the time, there was one physician in particular who loved to give a talk about red flags in order to help physicians learn to identify “problem patients”. The red flags are things like: patients who begin by telling horror stories about previous physicians; patients who bring a support person into the clinic; patients who use a cane, or other kind of walking device, even though their pain is really migraine. I'm listening to this and thinking about how a lot of people with migraine have had horror stories. Some people with migraines have vertigo, right? Maybe they have a walking stick for some other reason. Maybe they're in pain and they want to bring somebody to help them. None of these things seem out of the norm to me. I'm not a clinician, but I thought this list sounded like normal behavior for a person who has been in pain and has spent multiple years trying to seek adequate care.
Aviva: People who had inflammatory bowel disease like Crohn's disease and ulcerative colitis used to be considered to be difficult patients. I truly believe there's no such thing as a difficult patient – you can have difficult encounters with people who aren't communicating their needs or expectations. People would dread them coming into the medical offices, and we were taught to dread these kinds of things in our medical training. It's known that people who suffer from inflammatory bowel disease do have a lot more anxiety. One of my medical classmates had developed ulcerative colitis when he was nine years old, and he said his biggest concern in life is “Where's the bathroom”? It was pretty anxiety provoking to think that you could lose it in your pants while you're talking to someone.
These kinds of experiences can certainly cause you to have anxiety. What has come out with the advent and excitement around the microbiome is that gut changes can affect someone's personal experience of life so much, and even affect how you behave. There are a lot of operational things happening. I think that when you go to doctor after doctor and you're not believed, on top of the fact that you're living in chronic pain, it’s a setup for patient blaming – especially in a medical education system that does not teach empathy and compassion, but teaches us as doctors that we're supposed to know the answers. We're typically more type A people who feel like failures if we don’t know the answers, so there’s emotional projection and transference. The whole situation is a mess, and filled with so many people who are struggling.
Joanna: I've had migraines since I was a little girl, and I've had a lot of bad experiences. My current practice is really wonderful. When I had my first appointment, the nurse looked at me and said “No matter what, we won't give up on you”.
Aviva: I love that. I said that to my patient the other day and she started crying. It’s an amazing thing to hear.
Joanna: I remember relaxing. It's a small thing, but I thought it was such a powerful way to express empathy, but also uncertainty. It says that we don't necessarily know how or what we're going to do, or what this path is going to look like, but we're going to do it together.
Aviva: My patient is in a very different situation; she has struggled with symptoms for many, many years, and we've been working together for a while. She's such a lovely, gentle woman, and she apologized to me for taking so long to get well. She was afraid I was going to give up. I said those exact words and her tears of relief were so great – just to know that she had somebody on the journey with her. It's a lot of work to struggle with something the way that you have, while also having to do the research for yourself. It's exhausting.
Joanna: It means a lot to hear those words from a provider.
Aviva: So glad you heard that. I'm so glad.
Joanna: I think everybody deserves it. One of the things I heard a physician say to a group of cluster headache patients recently was an admission that doctors don't know everything, particularly when it comes to these contested illnesses. The physician said that the medications are okay and can help people some of the time, but a lot of what we're doing is experimental, and we're going to work together.
Aviva: It fundamentally changes the paradigm we've inherited of the doctor as the dominant, patriarchal controller of the relationship – the one who knows everything. When you have a partnership model, you actually believe the person that you're in partnership with. You trust them, and you're committed to helping them, as opposed to fixing them. It's very, very different.
Joanna: Absolutely. The provider has to be confident enough to admit that they don't know exactly what they're doing, and it makes a big difference in the healing relationship.
Aviva: Joanna, thank you so much for the rich conversation today. I feel like we could talk endlessly about this over dinner. Tell us what is the best way for listeners to find your work and your book.
Joanna: I have a website called www.joannakenner.com, and my book “Not Tonight” is available on Amazon.
Aviva: We'll put the link below the podcast episode. Joanna, everyone, thank you so much for joining me. I hope when you get to the next leg of your research with your next book, you'll join us again.
Joanna: Thank you so much for having me.
Aviva: Total delight.
Joanna: It's been a pleasure.