Hello, my name is Dr. Bill Young and I'm a professor at Thomas Jefferson University in the department of neurology and uh I'm one of the people who's running the ACT now program. Um I'd like to talk to you uh today about migraine stigma. Um this came to life for me many years ago. I was a young attending and a respected colleague came up to me at the Academy of Neurology where I had a poster and she said to me, "I'm so glad you do headache. I don't like treating those patients." She was very well-meaning, but it just left me with this uncomfortable feeling. And it kind of you know percolated in me and eventually I came to realize that this is kind of a manifestation of stigma that pervades the field of headache medicine. So what is stigma? Stigma is a social construct that describes an attribute or disease or disorder as deeply discrediting and getting some kind of sanction. So you are looked down upon when you're stigmatized and you're sanctioned um by society. Um so what are the main types of stigma? There really are three uh principal types. There's structural stigma which is the policies, the laws and the practices. Um that are created by legislators and policy makers. Um there's public stigma which is what people face, what what people say to you, the prejudice, the discrimination, the stereotypes. Um and those are um you know put upon you by the public uh in general. And then there's self stigma which is the worst of the worst which is the result of all these these other types of stigma over time leading to shame, low self-esteem and a lack of engagement in treatment. So here's another way of looking at it. Structural stigma and public stigma over time through the st self stigma process leads to self stigma with resultant depression and other con consequences like lack of seeking treatment. Stigma, interestingly, can be um studied in the language of articles of newspaper articles. And looking at this these articles, you can see that migraine is very highly stigmatized. not quite as much as the mental illnesses, uh addictions and um uh uh other uh in infections, but a lot more than almost any other chronic illness. So, here you see migraine lumped with neurologic diseases, and I'll blow that up a little bit. Migraine is the most stigmatized of the neurologic diseases. uh epilepsy is the second most stigmatized and another way you can break down within the language towards themes of judgment and disgust and among chronic illnesses uh migraine is the most negatively judged of the chronic illnesses and even in the domain of disgust migraine ranks very highly. So once again compared to other diseases in an unbiased way of measuring this um uh migraine is highly stigmatized and more so than other chronic illnesses uh and similar to uh uh sexually transmitted diseases like uh chlamyia. So, this was a my first study on stigma and um we took advantage of a newly published stigma scale for chronic illness and we looked in our clinic and we found that patients with chronic migraine uh exhibited more stigma than patients with episodic migraine or with epilepsy. So um and the epilepsy were taken from the epilepsy center a few doors down and they um and epilepsy remember before this discovery was considered to be uh the uh the most typical the most stigmatized uh uh neurologic illness. So looking at our data a little bit more in our clinics, chronic migraine uh patients uh felt more stigmatized were more stigmatized than episodic migraine patients and epilepsy patients. The ability to work was the best predictor of stigma. Um the mental component score uh of of a well-being measurement uh uh was most correlated with stigma. the physical component was only slightly predictive of stigma and using a regression model. Uh chronic migraine and epilepsy were equally stigmatized but only when you took out the disability because the chronic migraine patients that we studied were more disabled than the epilepsy patients. and the episodic migraine patients who had the least amount of disability were um less were less stigmatized than the chronic migraine patients. So in another clinic study um that that looked at stigma, disability, um frequency and severity, quality of life, a whole host of things. All of these things, anything bad about migraine correlated with stigma. And the stigma contributed significantly beyond migraine symptoms and was independently associated with disability and emotion related quality of life. The overcome study is a large populationbased study looking at the beliefs of persons uh without migraine. Uh and about a third of people without migraine thought that migraine should be easily treated or be due to a person's unhealthy behavior. And three out of 10 thought that people with migraine used migraine to gain attention or get out of their commitments. And interestingly, those who knew multiple people with migraine tended to have hold more negative attitudes towards people with a disease. Um, and I'm going to show you a little bit more about the outcome study. So, this uh graph shows people who have frequent uh migraine exhibit um more exhibit increasing disability. that's on the y ais. And among patients with the most uh stigma, people who had both the minimizing burden and the secondary gain types of stigma. Um they had the most disability. people who had only one, the minimizing burden type of stigma or the secondary gain type of stigma, they had uh less and those who had no stigma uh had the least disability. Again, this strong correlation between disability and stigma, but what correlates with being a stigmatizer? So, we've looked a little bit at who's uh at how people with um uh migraine view their stigma. What about uh people without who are the stigmatizers? Men are more stigmatizing. Uh non-white people, younger people, people who don't have migraine, uh people who fear pain, people who are not very empathetic, uh people who don't fear migraine, and lower income people in the study uh were more uh stigmatizing of others who have migraine. And in a a part of the overcome study that I just showed you, uh the first panel uh this one shows that people who have a family member with migraine stigmatize more than people who don't. So this kind of proximity to um the person with migraine increases the stigma. Also, people who had a c-orker who had migraine were more stigmatizing or were worse stigmatizers than those who did not have a coworker who had migraine. Um these are shown by comparing the red um the family member or the coworker with the blue and you can see that they endorse more stigmatizing attitudes towards people who have migraine. And people who um who uh never had migraine were less stigmatizing than people who used to have migraine or people who used to have other kinds of headaches. So again, these are kind of disturbing findings uh in those of us who who are committed to trying to stamp out migraine is that, you know, once you've had migraine then gotten better, you're actually a bigger stigmatizer than if you've never had migraine. This is something that I think that the headed community needs to try to understand and deal with, even if it's not very pretty. Um you can look at stigma across countries and it looks like that plenty of stigma in many countries in in this uh international version of the overcome study. the US and um and the UK were I would say the most stigmatizing country and interestingly France was the least stigmatizing country with um Japan a little bit less stigmatizing than than the mean. So once again you can show that um stigma exists in many most or maybe all countries and that it's worse in some US and UK and um better in others. So what are the consequences of stigma? One of them is less research. So migraine being the most stigmatized chronic illness has manifestly less of NIH funding research funding than it ought to have. And if you you know project how much funding migraine should have based on its disease impact um it is about 12 times less than it ought to have. that, you know, government ought to be uh funding about 12 times more for migrant research than it actually funds. Another consequence is that it's hard to get social security disability. And again, these are just things that you can measure. Um uh and uh you know based on over here in this panel the amount of stigma amount of uh disability uh that the disease creates which is five and a half% of all disability from disease in the US comes from migraine and yet only 0.3% actually um apply for social security disability. So people with migraine are less likely than expected to be applying for social security disability uh based on how disabled they are. Yet even if they do apply for social security disability, these panels show that they're actually less likely to get approval of their disability claim. So, it's harder. Not only are you less likely to apply probably because stigma keeps you from applying for Social Security disability, but when you do, you're more likely to be rejected um than would be expected. And stigma worsens pain. So, uh people who have uh who are stigmatized or discriminated against actually have more pain. And so you can imagine this this uh circle this sort of negative spiral where migraine symptoms cause migraine disability which cause more enacted stigma which increases internalized stigma which leads to poor quality of life and more worse migraine symptoms that then further um uh increases migraine disability. And stigma leads to less advocacy and more importantly to less advocacy dollars. So in the world migraine is responsible for 1.86 uh uh% of uh of disease um uh burden and Alzheimer's 1.83. And yet uh the amount of money uh spent on on migraine organizations is uh 200 or 300 times less than um for diseases that have very similar disease impact overall. Um, again, the amount of money put into advocacy organizations is a manifestation of the stigma against migraine. So, what are some ideas on how to reduce migraine stigma? These are some of the ones that we've had. Number one was disclosure. This comes from um you know looking at many illnesses and realizing that the destigmatizing efforts and more successful ones have often relied on disclosure on making awareness and teaching people how to talk about their illness and bring it out um into uh into public awareness. Think about AIDS. Think about autism focusing on disclosure. Empathy should be nurtured. We need to think about ways to help others to view people with migraine with empathy. Understanding that disability is the key. Understanding that we need to have a way to talk about the disability of migraine in a meaningful way. Um we think that talking about migraine as a brain disease is not going to fail. It's not going to work. It'll fail. It will um uh you know I think patients like to hear um you know that oh now that I understand that this is a real disease and there's dysfunction in the brain and that doesn't come from my character it's not a a weakness of mine that actually uh does not decrease stigma. um new ways or or attempts to reframe uh a migraine or any disease can harm. You know, there have been many attempts at reducing stigma and creating new frames for a disease that have backfired. So how we study ho h how how we look at uh changing stigma changing the way people view the disease really should be studied. You know it's very easy to shoot from the hip and say oh now that I get it I understand about stigma. Um it really needs to be studied. Um and uh you know people who may think that they know how to change it but it it's very hard to change um stigmatizing attitudes across a society. Um and we really as a community need to figure out how to do that. Uh I believe that patients have to lead you know successful movements that have reframed a disease have not been led by physicians. They've been that they've been led by patients. You think about breast cancer, you think about autism, you think about AIDS. Patients or their families were the ones, you know, who really reoriented society and changed perception of disease. um and that separate actions are needed to address structural stigma and active stigma and internalized stigma. So, Maf for Migraine funded a really important study um by Anastasia Hudgens looking at efforts to reduce stigma in uh in patients who were going to have an interaction with their physicians. and she came to some surprising conclusions that if a patient goes out and discloses their headache to a physician or to anyone really and is rudely re rebuffed um it actually reinforces the internalized stigma, the most dangerous form of stigma. and she suggested that we develop self- advocacy programming that accommodates and communicates the very real financial, health and psychological risks um that can follow self advocacy and disclosure. Um she thinks we need to reorient self advocacy away from reducing societal stigma towards um uh self- advocacy as a way to express the needs, goals, and truths of the person with migraine disease. She tells us that we should tell stories in ways that enhance well-being and that we need to identify the relationship between specific in instances of enacted stigma to the lingering feelings of internalized stigma that def in order to deflate the power of self-stigma. Let me try to rephrase that. Um that persons uh uh can think about examples and can deconstruct how um how the stigmatizing statement led to the selfstigma and that patient awareness of that can reduce the power of the enacted stigma. ma in creating self stigma in the future and people are not quite able to recognize or name the role of internalized stigma in contributing to the isolation and feelings of loneliness. So she's recommending that we really focus on the self-stigma process that we clarify what internalized or self-stigma looks like. We show people how self-lame, shame, guilt, and worry about what otheri other others think um is internalized stigma and that we break down stigma into its parts to recognize the difference between what can be controlled and what can cannot be controlled. Another uh aspect of reducing stigma has to do with naming. Um naming something a disease or a condition. So you know we like to say migraine is a disease reflects biomedical evidence and is a social process of negotiation. For example, osteoporosis was renamed as a disease. Erectile dysfunction went from a symptom to a disease. Uh and it was renamed from uh impetence into erectile dysfunction or ED. Um and another example is that LGBTQ uh used to be considered a medical condition and it was demedicalized. Obesity is, you know, being debated about whether it's a disease or not. And people are worried that, you know, calling something a disease or disease mongering feels like it's a marketing ploy by pharmaceutical industry. And so, um, you know, one may be stigmatized for trying to say that migraine is a disease and that it's not a genuine thing to say. Um however you know there there's been a kind of consensus uh that we actually should call migraine and a disease and this consensus is by patient groups through the coalition for headache and migraine patients or chap who recommends that we say that migraine is ai is a disease and you know on the occasions that we don't want to say this we call call it a condition and we don't call it an illness, a disorder, um, and usually don't call it a condition. We don't say migraines that emphasizes individual attacks. We say migraine just like we say asthma that emphasizes that it's an ongoing disease which has attacks. We don't say migraine headache. We say migraine because migraine is more than a headache. that has you know many many many other symptoms. We don't say migra just like we don't say epileptic or schizophrenic. We say a person with migraine. We don't say migraine sufferer. A person who has the mig who has migraine themselves can say migraine suffer. But it's not up to us to call someone else a sufferer. A person it's a person with migraine. We do not ever say that, you know, there's a migraine personality or a migraine type person. There's only a person who has migraine. And we don't like medication overuse headache. That's stigmatizing. So we use rebound headache or medication adaptation headache. So in summary, you know, the discovery of stigma has led to considerable knowledge and understanding about uh how much stigma, how very severe a problem stigma is in the field of migraine for patients and for the doctors who take care of them. and that you know we need a cohesive thoughtful approach uh to reduce stigma overall and to reduce the burden of stigma on the individual who has migraine. Thank you.