S4:Ep18 – Understanding How Migraine Can Impact Relationships
Voice-over: Welcome to Spotlight on Migraine hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease. This episode is brought to you, in part, by our generous sponsors, Praxis, Collegium, and Amgen.
Migraine often affects many aspects of our lives – work, home, social life, and especially our relationships. In this episode, licensed psychologist, Dr. Dawn Buse, discussed how migraine can impact interpersonal relationships and offers tips for managing migraine and preserving the many types of relationships we have.
Molly O’Brien: Hello, and welcome to Spotlight on Migraine. I’m your host, Molly O’Brien. Today we’re talking about how migraine impacts relationships. Super excited for our guest today and to discuss this topic. Our guest is Dr. Dawn Buse. Dr. Buse is a licensed psychologist specializing in helping people live well with chronic diseases and chronic pain. She’s a clinical professor of neurology at the Albert Einstein College of Medicine. She has 20 years’ experience as a clinician and researcher. Dr. Buse, thank you so much for joining us.
Dawn Buse, PhD: Hi, Molly, and hello to everyone watching today. I’m happy to be here. This is one of my favorite and really an important topic.
O’Brien: It’s going to be a great discussion, and we’re glad to have you here today. So, many of us know how migraine can impact so many different areas of our life – work, social life, family dynamics, relationships we have. It’s almost like this third party in our relationships. So we’re going to talk about how migraine can play a role in this.
Now you’ve done extensive research on this topic – how migraine impacts relationships. Could you give us just a brief understanding of some of the research you’ve done and what you’ve learned from it?
Buse: Absolutely. So it’s interesting I’m actually, as a psychologist, I talk to people one-on-one – or maybe a couple or a family – in the privacy of my office. And I hear heart wrenching stories, which people listening are going to understand exactly what I’m talking about, about life with migraine. And then my other hat is as a researcher, I’ve been lucky enough to conduct some really large epidemiologic studies. And epidemiologic studies – or epi for short – means it’s not a clinical trial where people are assigned to specific treatments; it’s just a snapshot of what is your life like.
And I’ve conducted these mostly with my wonderful colleague, Dr. Richard Lipton, who’s brilliant and a wonderful researcher. And we’ve been conducting these studies…he has for about 30 years, and I joined in 20 years ago. And you might have heard of some of these names like the American Migraine Prevalence and Prevention study or AMPP, which was 5 or 6 years observing people from 2004 to 2009. We sent surveys, and back in those days, people would fill out a paper/pencil long survey and tell us about their life.
And then the CaMEO study, the Chronic Migraine Epidemiology and Outcomes studies – and by that point, we had switched to web base, so people got to respond on their computer or their phone. And all the up to the OVERCOME study, which our most recent largescale study. When I say largescale, OVERCOME has about 60,000 Americans living with migraine, and there is also some data collected outside the US. So, when I’m one in my office or whether it’s 60,000 Americans, people tell the same stories.
We hear the same themes because we’re all human living with a disease, which when we break down migraine, it’s got some terrible characteristics. It’s painful. It can be debilitating beyond pain, right, nausea, sensitivity to light, ugh fatigue, cognitive challenges. It’s unpredictable. It comes without warning for most people most of the time. But not only is it unpredictable, it’s sneaky. It comes usually at the worse times. And there’s some biologic reasons for that. It comes when your stress is really high – before the holidays, during finals, a big project at work or school, your wedding. It strikes at those times, not that you’d ever want it, but when you’d like an attack the least migraine tends to strike for some actual biologic reasons.
So, living with a chronic, unpredictable painful disease is not easy for anybody. We’re all human. But it’s what we can start to learn from these big studies is how do lots of people feel, think, and react. And one reason, Molly, why I think it’s so important to share is because a lot of times, I think we can get quite isolated and feel like we’re the only ones. We’re just not handling it well. Guilty – I’m not doing a good job, sad, hopeless, helpless, and isolated. So listening to a podcast like this and realizing well literally, you know, 75% or 95% of 60,000 other people felt that way too, I think can be validating, and it can be kind of encouraging, and it can help break down some of the stigma. So we really want to break down stigma around life with migraine.
O’Brien: Absolutely. And I really do think that our listeners will gain a lot from this insight speaking from both your research background and your clinician background as well. So let’s dive into our first type of relationship. Let’s start off with those that we are romantically involved with or are domestically involved with – partners, spouses, people we are dating. What type of challenges do we most often see in these types of relationships when it comes to migraine?
Buse: Well depending on what your relationship is, so if you’re dating, you might have some different challenges versus say you’re a couple who’s been married or partnered for decades, and maybe you have children. Now you have different responsibilities. So let’s start with that couple who maybe even they do have children. Now there you’re talking about divvying up responsibilities. And as we talked about these painful and predictable attacks coming, there might be times, as we all know, when just all of a sudden that morning, that day it’s really hard to function, and you may need to rely on the other person for anything – chores around the house, caring for yourself, caring for children, caring for pets, caring for seniors. Who knows what the responsibilities were that day, but you may need a lot of help.
So, that can be one thing that can start to happen where couples can get a bit imbalanced where it becomes more of a caretaker/caregiver rather than kind of a couple who feels like they’re both contributing and helping equally. That can lead to a lot of guilt for people living with migraine. It can sometimes lead to resentment on either sides or both sides. And sometimes the person with migraine will say, well after I’m done with the attack, then I feel like I have to make up for it, have to do all the housework and the chores and the shopping, and I don’t feel like I should relax or do anything fun because I missed out on that part.
And that same thing might happen, also, in the workplace. We feel like we missed out on responsibilities. And then once we’re past an attack, we feel like oh now we really, really have to make up for it. And so we kind of don’t give ourselves much of a break. And I find that people living with migraine can be pretty hard on themselves.
So that can be one thing that can happen – is just kind of the responsibilities of daily life sharing. Of course, we also know that planning ahead can be really tough for people. People may have PTSD about making plans. What is going to get canceled? What am I going to need to leave early? And it can be small plans. You know, it can be committing to drive the carpool, it can be committing to a work project. It could be those bigger plans – planning an extravagant big vacation a year or two down the road. So people get nervous about making plans because they may have had all sorts of experiences where their plans were disrupted, and that can be hard for the couple as well.
But really, this all comes down to a lot of communication. A lot of talking about what the attack is like, what the person having the attack needs, how that person can be helpful. And also trying to get as many kind of safety measures in place – plan B in place when attacks are not happening or before attacks. So that when an attack happens, you already have a go-to, you know, colleague you can call for help, maybe another parent who can help out. Maybe if you have children, they’re old enough that they can kind of get…that you’ve already got their bags ready, or they can get them ready.
And one thing to remember is everyone who cares about you wants to help, but they don’t know what to do or how to help. And helping can sometimes, during an attack, be as simple as keeping quiet – not being there, going away. Little children can be said to help by bringing mommy a washcloth or, you know, patting daddy’s hair quietly and then going and playing quietly. And our partners want to help, too. Again, they’re kind of feeling helpless as they’re standing by watching the person they care about be put through terrible pain and disability, and they want to do something. So it’s really good to communicate about what we would like, what would be helpful, as well as what we can’t do.
O’Brien: First of all, I want to say you mentioned I hope this information helps people feel validated. And I’m sitting here thinking oh, I feel like you’re talking about me. So thank you for validating me; I hope our listeners are getting the same out of this. But I do think you hit on an important point that communication is crucial in these kinds of relationships. And also, laying out a plan or suggestions – have these types of talks before you’re in an attack because it probably will not be communicated the way that you would like it to be when you’re in pain, or your vision’s blurry, or whatever your symptoms are.
Do you have any other advice for these types of spousal/dating/domestic partnerships? Any other ways we can effectively communicate to help get through these types of challenges?
Buse: Sure. Well depending on how much the other person knows about migraine, it might be helpful to start somewhere like the AMD website, the NHF, or the AMF, this is migraine. Migraine is more than just a headache. Talk about symptoms, talk about the fact that it’s multiphases, talk about what you might even feel before the headache, aura, prodrome. That even after the headache phase, you might feel washed out and have cognitive challenges for a while. So kind of teach them a little bit about migraine, what to expect. They can do it on a website, they can come with you to a doctor’s appointment.
If you’ve got a younger child, you also want to reassure them that this is not fatal – that while you look like you’re in terrible pain, this is an attack that will pass, and you will sleep, rest, and take your medicine and be back to yourself later today or tomorrow. It’s really important to reassure younger children, but it’s kind of important to reassure everybody – yes, it’s painful and debilitating, but I will be okay, I will come out of this. And that can be very helpful. So, Molly, you mentioned dating, and I think we’re going to have to do a whole other conversation on dating. That is a really important and challenging area. That’s an area where you start to think, in the beginning, of course you’re presenting your best self.
And, you know, then you realize some things start to come up. You may not feel well enough to go on a date, or you may be together out, and you have an attack. And it’s often a really important experience for that other person to start to see a bit more of who you are and what you live with. And how you talk about migraine with them is really important. So one of the things it’s important for us to all remember is this is a neurologic disease. It’s not a character weakness. It’s not a psychological problem or issue. This is neurology. It’s the nervous system of the brain, the spinal cord. Things happen out there. Things happen in here. And it gets activated, and this fireworks of 12 different symptoms come. You have a predisposition of genetics. It’s no one’s fault.
So it’s really important to talk about migraine in a matter of fact way. You can use that disease language, so that they understand this is not something that is a character weakness at all. And maybe you have to explain to the person how common it is. One in four households in the US, one billion people – with a B – around the world have migraine. You probably already know many people with migraine; you may have just not known it. Or maybe they do know someone close with migraine, and they might understand it. But kind of talking about it in a way that’s unapologetic. Just say this is something I live with. And then, if they’re not familiar with migraine, demystify it a little bit. You know, say these attacks can be a whole day or two. It’s a lot of different symptoms in addition to the headache. I might have trouble thinking or speaking clearly, and I’ll be pretty tired. But then it will pass, and I have some treatments.
So, kind of giving them a lay of the land is really helpful. Because people might have heard the word migraine throughout their life and never actually know what it meant. So, you’re kind of the ambassador of teaching them about the disease. And the thing is while you’re newly dating and everyone’s presenting their best self, we might not be thinking about all these things that the other person’s probably living with too. But as you go through life together, you realize everyone has challenges. Everyone’s got health conditions. Everyone has psychological challenges. Everyone has life challenges. If we’re lucky enough to live a long life, we don’t get through unscathed. we all have our scars and our bumps and our bruises. And this is really just the beginning, as a couple, of navigating/supporting each other through those life challenges.
O’Brien: And that’s an absolutely beautiful way to put it. And I am in. We’ll figure out another time to talk more about dating. I already have a bunch of questions going through my head. But we’re going to move onto a different type of relationship, which you briefly talked about just a moment ago. Let’s talk a little bit about family dynamics – like that parent/child dynamic. I know, as a fairly new mom, parenting with migraine can feel impossible at times. I know that for other people, it can be totally manageable. Just depends on people and their disease. Also, we have the flipside of the dynamic – maybe a parent has a child who lives with migraine disease, and that can be so hard and frustrating and sad and painful to watch them live with migraine and deal with that.
So let’s talk a little bit about this type of dynamic. How can we manage that? And is there a way to improve these types of relationships that are affected or impacted by migraine?
Buse: Well, Molly, first off congratulations on your little one.
O’Brien: Thank you so much.
Buse: How wonderful. So you’re already an expert on this topic, yeah. Parenting is joyful and wonderful – I have two sons – but hard on the best day. Parenting is never as easy as it looks in the movies or on social media. Nonetheless it’s, you know, of course, a wonderful experience but a lot of challenges. So, parenting is a bit different than the partnership relationships because if your children are younger, they really need you and rely on you. And there’s all sorts of different household constellations. You may be a single-parent household where you don’t have someone else there for help. Or maybe you do have a partner, maybe you have a grandparent, maybe you have a nanny or a helper who you can count on.
Well, the more that you can kind of build a constellation of support people from whatever they come from – they might be family, they might be people who are kind of hired as helpers but become family – whoever they are (other parents) you need that support network. Remember me saying to you people want to help; all you have to do is let them help. So please let people help. Trying to get that support network, as much as possible, so that when you need it, you’ve got people that you can call on to help with your children. Trying to have plan Bs in place.
And, you know, I’m preaching to the choir. People with migraine are amazing at plan B. They’re Boy Scouts and Girl Scouts all the time. They’ve always got their backup plans ready knowing what responsibilities you need to have taken care of. Are there things that you can have ready for your kids that they can enjoy, entertain themselves, or ways that they can be safe and happy while you’re taking care of yourself. You know, what can you have in place?
And then, communication with your child is essential. So we do know from the CaMEO study that people with migraine with children feel like they miss out on daily activities like being with homework or having their child make dinner maybe before an age that they would have normally expected them to. Or bigger things, you know, those big events – getting ready for the prom with them or graduation or big events, too, are missed. And parents feel a lot of guilt and sadness about this.
In the CaMEO study, we also sent surveys to those children – mostly teenagers, they had to be 13 years of age or older – of adults with migraine, which boy you ask a bunch of teenagers how they feel about their parents, you don’t know what you’re going to get. But they did say yes, they did miss things because of their parent’s migraine. But also, they’re so resilient, and they were compassionate and supportive and understanding. And, of course, a fair percentage of those children of adults with migraine do experience migraine themselves, so they were kind of going through that journey themselves.
But children are more resilient than we think. And a parent with migraine, while it sounds so big, if it’s what’s your experience, is really still a parent who’s there and part of their lives and caring for them and taking care of them. And that’s not the only label that they are going to remember as they grow up. They’re going to remember so much else of that relationship. So, parents beat themselves up a lot; there’s a lot of guilt, a lot of sadness. Yet, what you can do is talk about it before, during, and then try to make the migraine-free moments, you know, what you want them to be, as well as possible.
And one thing I really want to recommend is don’t put life on hold too much. We’re all nervous about canceling plans. But try to make those plans with people that you can trust and feel like if you have to say later if I have to cancel, I’ll let you know, if I can’t be there, if I have to come late, if I have to leave early. Try to find people who are more accepting of that and try to keep living your life as much as you can. Because it’s good for your spirit, and it’s good for your family as well.
O’Brien: And I love the way you put that into perspective that – and this is through research – that’s not the only area that children remember of their parents. Maybe it’s a snippet of it, but there’s so much more to being a parent. So I really appreciate that insight. Let’s talk a little bit about, again, that family dynamic and talk about just how, you know, a parent…that it can impact a family dynamic in so many ways. A parent might not be present for the child, which we kind of touched on. The caregiving responsibilities if you are in a joint caretaking relationship. So if you have a spouse or a partner who also is involved with the child, they might have more of a caregiving burden.
But migraine can also impact the decision to have children. And so let’s talk a little bit about what we know about how families can work through all this together, so that their feelings are valued, and we try to get away from that resentment. That resentment is a really tough thing, especially if you have migraine guilt, and your partner or child is resentful. That’s tough to work through. So what advice do you have for us in that regard?
Buse: Well that’s such an important point, Molly, and when we first collected these data, I was flabbergasted, and I would say that’s still one of my datapoints of my whole career that make me the most kind of emotional. Because being a mother myself, the fact that many women living with migraine – especially more frequent migraine, chronic migraine, even high episodic frequency, 8 days or more a month – either chose to not have children, delayed having children, or had fewer children because of migraine. And there’s a couple of different reasons.
And it’s come from 3 different studies now – the Eurolight study is of 11 different European countries; they found that. And then we found it in the CaMEO, the chronic migraine epidemiology study in the US. And then, they found in the ARMR study, the American migraine registry for migraine, also found that some women…and I regret that we didn’t survey men, too, I’m sorry we didn’t survey the dads. Sorry, dads, you matter too.
O’Brien: Next time.
Buse: For sure, for sure, there’s always more. But there were several reasons why people might either choose that they don’t have children or delay having children. One was the obvious kind of might come to mind I don’t know if I could care for a child or another child because of my migraine. I’ve got too many days that I’m disabled. Or I can’t be there to do what I need to do for them. The second was kind of a fear and sadness of passing on migraine to another human because it does have a genetic predisposition. Although of all the genetic predispositions in the world, I know there’s pain and suffering with migraine, but you are still physically – you know, between attacks – can be entirely healthy. And is something that, you know, migraine has been around since the dawn of recorded history. It’s in Egyptian hieroglyphs, including migraine with aura.
So, it’s not going away for humans – and, sorry, I know that’s not good news – but also it means it’s not a…it didn’t fade out. You know, sometimes things that really have real kind of disabilities in functioning by natural survival, you know, natural selection they fade away, and migraine has not. Migraine prevalence has remained relatively stable, which makes us think that it’s kind of here to stay. While our treatments are getting better and better every year – thank goodness – and our knowledge is getting better and better, it’s been around a long time. So some people have the fear of passing it on to a child. And then some people also have fear of what will pregnancy be like coming off treatments and medications – pregnancy and postpartum, breastfeeding, is that something that I can handle? So that might be a reason they delayed getting pregnant for some amount of time. And there are more reasons that people gave as well, but those are some of the top 3.
And so, for anyone who would ever dismiss migraine as not a serious disease, a disease that makes people think about not having children is a serious disease. There’s no question about it. And that really, really speaks to me. It makes me so sad to think there may be people who would have liked to have had children or tried having children, had more children and didn’t because of migraine. And if you’re in that boat, I would really encourage you to talk to your healthcare professional. They can really help you through both pregnancy, prepregnancy, as well as kind of life as a parent with migraine. Our treatments are evolving all the time, our pharmacologic treatments, our nonpharmacologic treatments, and our knowledge is better all the time.
So, despite it not being easy being a parent or a spouse or dating or a friend or a coworker with migraine, I wouldn’t want you to miss out on any of those aspects of life. If you want to do them, please do.
O’Brien: Wonderful. Dr. Buse, I could talk to you all day. Unfortunately, we’re running out of time. So I just want to thank you so much for speaking to our followers and listeners and giving the…everything that you’ve said it’s so nice to have that research background but also that clinician background point of view as well. So we really appreciate you joining us here today. I know I’ve learned a lot. And I hope we can have discussions in the future. So thanks, again, for joining us.
Buse: I would love that. Thank you, Molly. And I wanted to tell everyone, as well, all the research that we ever conduct is available to the public. So you can go read it yourself. And I would encourage you to if you are interested in any of these topics. It’s all on a website called PubMed (P-u-b-M-e-d). Now you can’t always read the full article because sometimes you need a subscription to a journal, but you can always read the abstract. And the abstract gives you a lot of information. So if there’s anything in migraine research that you’re interested in, you can go right there yourself and read it right for yourself.
So, thank you, everyone, for listening. Thank you, Molly and AMD, for allowing me to talk about this topic that’s very near and dear to my heart. And I wish everyone well.
O’Brien: Well thank you, Dr. Buse, so much for joining us. And thank you to all of our followers out there for catching this episode of Spotlight on Migraine. I’m your host, Molly O’Brien with the Association of Migraine Disorders. We’ll see you next time.
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