Migraine and Social Stigma [Interview][Transcript]

Prof_Joanna_Kempner_migraine_social_stigma
Guest: Professor Joanna Kempner
Presenter: Neal Howard
Guest Bio: Professor Joanna Kempner works at the intersection of medicine, science, gender, and the body. Her research focuses both on the formation of social problems and on the ways in which some issues are consistently ignored, dismissed, or de-legitimated. Her book, Not Tonight: Migraine and the Politics of Gender and Health (Chicago 2014) examines the social values embedded in the way we talk about, understand, and make policies for people in pain. She has also written extensively on the formation of “forbidden knowledge,” i.e. the boundaries that form around what we think is too dangerous, sensitive or taboo to research. She is currently working on several projects related to the politics of disease.

Segment overview: In this segment Professor Joanna Kempner discusses the social difficulty those with migraine share and the need for more funding in headache research.

Transcript

Health Professional Radio

Neal Howard: Hello and welcome to Health Professional Radio. I’m your host Neal Howard, so glad that you could join us today. There are a lot of places that you could be right now and you choose to hang with us for a little while. Our guest in studio today is Professor Joanna Kempner. Now she’s been here before and she’s agreed to return here today to talk with us a little bit more about migraine and some of the social stigma that has been associated with this disorder. She received her PhD from the University of Pennsylvania, with a fellow in the Robert Wood Johnson Scholars in Health Policy Research Program, and is currently working on several projects related to the Politics of Disease and the Sociology of Medicine. How are you doing today Professor?

Joanne Kempner: I’m great. Thank you for having me.

N: Thanks. You know when it comes to a migraine headache, we’ve all been watching a movie or seen a television show or someone that we actually know and said “Oh you know I’m going home, I had to leave work early because I’ve got a migraine or I think a migraine is coming on.” I do have a little bit of, well quite a bit of experience with migraines seeing that my wife suffers from migraine. She spoken of an “aura” that she sees prior to the onset of a migraine. In your experience, what are the warning signs? What are the symptoms of migraine?

J: So an aura is something that only about 20% of people with migraine gets. Auras can be visual, they can be something that you hear.

N: An auditory, yeah.

J: Yes, they can be auditory. And they can come before a migraine so they can let you know that the pain is coming.

N: Uh huh.

J: But even if you don’t get an aura, people with migraine can sometimes experience other symptoms that let them know that a migraine is coming. And they can be very odd, it could be yawning, it could be a kind of a fatigue, there all kinds of things that people report happening to them before they get their migraine. Sometimes people smell things that aren’t there and so forth. And then the migraine themselves for some people, it’s the kind of classic migraine would have a throbbing headache on one side of your head lasting between 4 and 72 hours, so they’re unfortunately in the case your wife much longer that can happen, accompanied by light and sound sensitivity and nausea. Some people don’t get the headache, they only get the aura of that can happen. You can also not get the headache and just experience the other symptoms as well. So they’re all different kinds of manifestations of migraine, the important thing that’s linking them together is kind of neurobiological experience. I think the real crux of your question is how do you know of somebody else is having a migraine? And the answer is you can’t. And that’s the problem, it’s an invisible disorder. And so migraine has come to be a part of as an excuse, and you know I’m sure there are people who use migraine as an excuse when they don’t have migraine, and you have no doubt if that’s the case. But that doesn’t make it any easier for those people who legitimately have a migraine. There is this survey done in the UK asking employers what excuses they thought were more or less legitimate to use for a sick day use for a sick day and migraine was in the bottom of the list. It was under a cold, it was under a stomachache, it was under everything. So migraine I think has been come to the understood as a kind of excuse you give, it’s a lazy excuse. It’s not even just an excuse, it’s a lazy excuse.

J: No thought or effort goes into the lie basically, right?

J: Exactly.

N: If some of this odd or strange symptoms that were talking about can be associated with so many other things and not a migraine, and yet in some people they are associated with the migraine, I can begin to see the difficulty in legitimizing migraine. Playing a little devil’s advocate, you know what I mean?

J: So how do you know that these complicated symptoms aren’t part of something else?

N: Yeah. I mean, the symptoms seems so generalized. It seems like until you’re laid out in a dark room, very quiet, it’s not necessarily a migraine, unless you’re someone who so experienced with the migraine headache that you know for a fact. But if you’re someone who’s experiencing migraine for the first time, you might spend a great deal of time, effort and money determining that what you’re suffering from is migraine before you get some of the medicine that will effectively combat it?

J: That’s absolutely true. And some people never get the diagnosis of migraine, even though I have migraine running through my family it took me years and years and years before I was told I had migraine. I just thought I had these bad headaches, I didn’t know what caused them. I thought it was because I had an injury to my neck or that I was sleeping wrong, I had no idea. So I mean people don’t know that they have migraine necessarily. And headache specialists think that most people who have a diagnosis of sinus headache, actually have migraine.

N: Now that’s huge. That is huge because I have been to the doctor on a few occasions and was told almost immediately “You’ve got a sinus infection. Take this go home and in three days it will clear up.” I never experienced a drip, I never experienced any dryness, and it was just a headache – a lot to think about.

J: So the reason why is that I think over 90% of people who are diagnosed with sinus headache have migraine because that feeling of congestion without a drip is your trigeminal nerve pushing against your sinus.

N: Okay, well then maybe there’s some other questions, I need to ask next time I go.

J: (Laugh)

N: Now in your book, you explained that the pharmaceutical industry has done quite a bit in an effort to legitimize migraine medicine. Glaxo welcomes development of a drug is a huge advance in migraine treatment. And you say that it also demonstrated that at least some migraines could be aborted with a drug. Is this proof finally that migraine is real or do we still have quite a way to go?

J: Well I remember Glaxo came out with “Sumatriptan” I think it was released in 1993 in the United States. Sumatriptan is known as “Imitrex” in the United States. And when I first had it, a shot, it was first came out as an injection form, my migraine just disappeared and it was the most amazing thing I had ever experienced. And I just thought finally people are gonna believe me that I have migraines because of the shot can take away my migraine like that, then it must be real.

N: Uh huh.

J: And that is how doctors and patients talked about in the church, they talk about this miracle of the drug, they also legitimized the migraine treatment because it attracted pharmaceutical interests to migraine medicine. Suddenly doctors were getting a ton of funding, not just from Glaxo but from all the other pharmaceutical companies who are interested in making new drugs. And I think something like 7 drugs total were developed that were just the same, and you know tweaks from that same kind of drug. And so for a while headache medicine was a really nice place to be, they were making real money. So that was a real deal for headache medicine. But I also argue in my book at the pharmaceutical industry in some ways undermines the legitimacy of migraines, can I talk about that?

N: Absolutely.

J: Okay, so one of the things that I noticed in particularly really in headache conference. So on one hand you had all of this headache doctors pushing the neurobiological paradigm of migraine and really pushing that migraine is this neurobiological disease and trying so hard to boost the status of migraine. And then in another room you would have all the pharmaceutical companies selling their drugs.

N: Uh huh.

J: And they would have these huge pictures of women, with their hand on their head, trying having their migraines and taking the medicine and feeling better. And it was a very striking comparison to me. So I went and I did a content analysis of the advertisement for migraine and by and large all drug advertisements for migraine pretty much look the same.

J: It’s kind of playing both ends against the middle?

N: Yeah, well they depict the average migraine patient as white, well-to-do woman and she’s easily treated with a pill and she’s usually with children, and she’s like a nurse and she’s taking care of them or she’s their parent. And she’s either in pain and so she can’t take care of the kids or she’s feeling better, she’s taking them for medicine and she can care of her kids. And so the ultimate effect is that it portrays migraine as this highly feminized, very weight disorder that keeps women from fulfilling their duties as caregivers, but which is easily treated by a pill. And I think that is a really powerful image, because mostly because of what it doesn’t the show. And what it doesn’t show is legions of men who get migraine. People of color who get migraine who are significantly undertreated, where the 50% or so of people with migraine for whom the drugs are ineffective. We don’t learn from these ads that the drugs are extraordinarily expensive and therefore inaccessible by much of the population. And so what the public sees at least here in the United States talking about direct to consumer advertising, our advertisements that showed migraine as a pretty easy to treat disorder. But on the other hand we have a reality in which treatment’s expensive, it’s difficult to access and it’s not very good. And ultimately I felt that this contributed to migraine’s legitimacy deficit.

N: Now wrapping up this segment, when we’re talking about the stigma and the legitimacy deficit that exist around concerning migraine headaches and its research, I guess what about vanity migraines? I remember when Botox came out, it was the thing to get some Botox injections in your face whether you need them or not, everybody was doing it. And then all of a sudden it seemed that Botox was working for all sorts of different things even migraine headache, is that a scam or is it a legitimate treatment? And if it is a scam, is it something that celebrities are saying “You know, I’m this famous person and I suffer from migraine so this is what I do.” Is it one of those things were you get a celebrity endorsement in order to push a supposed treatment?

J: That’s an excellent question. It’s one that I don’t think I’m prepared to answer. But I think you should stay tuned for my next project. (Laugh)

N: Absolutely.

J: I also think … well I’ll leave it at that.

N: Okay. Now where can we get a copy “Not Tonight: Migraine and the Politics of Gender and Health?”

J: It is for sale at the University of Chicago Press website, or at amazon.com or any other major book retailer.

N: And I understand that you do have a website as well?

J: Yup, it’s www.joannakempner.com

N: You’ve been listening to Health Professional Radio, I’m your host Neal Howard. And it’s been an absolute pleasure speaking with returning guest Professor Joanna Kempner. She’s been here with us discussing the Social difficulty those with migraine share and the need for more funding in Headache Research. And we’ve also touched on how the pharmaceutical industry has both helped and hampered research into this condition. It’s been great having you here with us today Professor.

J: Thank you so much for having me.

N: Thank you. Transcript and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm and you can subscribe to our podcast on iTunes.

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