Molly O’Brien: Living with migraine can impact every aspect of your work life, from productivity to personal identity to long-term career decisions.

I’m Molly O’Brien, and in this episode of Spotlight on Migraine, we explore big questions surrounding migraine and work. We’ll talk about all of the emotions around migraine and the workplace, when to disclose migraine, what accommodations are out there, and when it might be time to rethink your career path.

To answer these questions and more, I’d like to introduce our guest, Dr. Dawn Buse. Dr. Buse is a clinical professor of neurology at the Albert Einstein College of Medicine, a member of the board of directors of the Headache Cooperative of the Pacific, and a licensed psychologist. She’s worked with people with migraine and other chronic conditions for more than two decades. She has around 250 scientific publications and has won 15 US and international research and professional awards for her work in the field of migraine and headache disease.

Dr. Buse, thank you so much for joining us today.

Dawn Buse, PhD: Thank you, Molly, and hi to everyone listening.

O’Brien: So before we start our conversation, I just want to set the tone for the audience. Managing migraine at work looks different for everyone based on their symptoms and, obviously, their job, their career. So, we won’t be talking about managing actual migraine attacks at work, logistically. Instead, we’ll discuss ideas for talking to work about how migraine impacts you. We’ll talk about accommodations and then also navigating our own ambitions, goals, and emotions at work and in a career. 

Let’s go ahead and dive in. Migraine and work – it can be very tough, and it really brings up a lot of emotions that can be difficult to discuss. Why do you think that is?

Buse: One of the major areas that migraine negatively impacts is work, and that can have major, far-reaching implications for people. Obviously, people rely on the income that work provides to support themselves and their family members and anyone else they care for. Work is really integral to who we are. People need to work to support family and support themselves. And we also have desire to work to contribute to the world. For many people, their work or career choice is a major source of identity. It’s who you are. It’s what you do.

You know, if we think we all kind of are a pie, you know, we might be a mother, and a sister, and a wife, and a daughter. And, for me, I’m also a migraine researcher, and a migraine advocate, and a health psychologist. And to lose all of those things loses a big portion of who I am. And so, our identities are very tied to our work.

They also make us feel…work makes us feel that we’re worthy. We’re contributing to the world. We’re contributing to our family. So, work has many meanings, and it’s different from person to person. But there’s a lot more emotion tied to it than we think at first.

O’Brien: It’s so true. Especially, I think, as Americans, so much of our identity and self-worth and value is wrapped up in work, for better or for worse. So, it’s nice to get that perspective and that validation that it’s not solely individual. It’s a communal experience that we all have this kind of relationship with work. 

Buse: It is. And like you said, what do people most often say when they meet you? What do you do? It’s not what are you passionate about? What do you love? What’s important to you? What are you excited about right now? What do you do? And then you are left either having an answer that you feel comfortable with, or sometimes people don’t have that answer anymore. And right there, people end up feeling sad, ashamed, guilty, embarrassed, all sorts of things when they can no longer do what they would like to be doing or what they trained to do or never even got to finish training or taking those career advancements in a career path they might have wanted to have taken.

O’Brien: We’ve kind of set the stage for how our relationship with work and migraine kind of coexist. And we know that everyone’s experience with migraine is different. And as are our job situations, you know, some people might be teachers, some people might be bus drivers, construction workers, work in an office. Everyone’s situation is different.

But that being said, when do you think it might be an appropriate time to bring up or talk about migraine with your employer? Could it be beneficial to do so up front? Or on the flip side of that, could it possibly work against you? I know I’ve had fear that I might not get a job because of migraine. So when do you think is an appropriate time to bring up migraine at work?

Buse: What a good question. As you mentioned, work situations and relationships with employers differs for every person. Now technically, we know that Americans with Disabilities Act covers and protects people with all sorts of physical and mental diseases and conditions, so that they can have accommodations in the workplace to be successful. So legally, technically, you should be protected. However, there’s a very human part of the job interview, of people giving reviews, of considering promotions, of considering pay raises, that may not always get that fair treatment.

So in some cases, it really may be important to talk about at the interview stage. You mentioned some jobs where if someone has a migraine attack during that job, it might really be problematic. A pilot, a surgeon, a neurosurgeon – there are jobs where it’s going to be really a problem for someone to have an attack during various roles that they have in their jobs.

And then there’s all sorts of careers which is just difficult to manage migraine in because you don’t have a lot of flexibility in that moment, or you don’t have a lot of backup in that moment. So let’s take a flight attendant. She or he is already on the flight, so there’s no more people coming in to help. There’s not really a great place to relax and sleep. And if someone is actually sick to their stomach, that’s not real easy. And I have been told by flight attendants, when I’m on a plane before, oh, I just got sick in the bathroom, I cleaned myself up, I took my medication. I’ve got to keep working because I don’t have any other choice. So, there are so many careers where it’s difficult to manage the attacks in the moment because everyone’s counting on you.

Now technically, you should be able to tell either your boss or your HR department about any diseases and conditions that you have and work through a combination. But that doesn’t mean that they necessarily need to leave you in that same position. They may decide, well, this person can’t fulfill this position. Let’s go back to bus driver, you mentioned, school bus driver. They may say, okay, this does not feel safe for us to have this person in this position. We can go beyond migraine and talk about other disease states where we would say this is not a safe situation to have a school bus driver driving children who might have various attacks.

So, in each workplace and with each different type of supervisor and HR department, it might be a little bit different when it feels like it’s the right time to share. However generally, it is helpful to find someone who’s trustworthy to share – and it’s usually going to be the HR department – so that they have the information about what to expect so that when attacks do happen, they’re not taken off guard and so that you can work towards those accommodations. And the accommodations can be very key in managing working life with migraine.

O’Brien: Glad that you brought that up to discuss possible accommodations. Let’s talk about some of those. Again, every job situation is different depending on what you do. But what types of accommodations might be available for people, and how can employees advocate for themselves to access these accommodations?

Buse: The accommodations range, as you mentioned, depending on the individual’s needs as well as their workplace environment or demand characteristics of the workplace.

So, someone like me who has an office with a door, I might be able to have an attack, take a medication, close my door, and maybe have some quiet calm for a moment. So maybe the accommodations for someone in an office might have to do with lighting. Maybe the lighting – direct lighting – is too harsh. Maybe they would like to be able to have therapeutic lighting on their desk or wear therapeutic glasses to help with lighting. 

Environments in the office can also include odors, which could be fragrances, perfumes, colognes from other people, as well as various chemicals, all sorts of odors. It may be something that the person can ask for an accommodation. They can move to a different location, they can have an office with a door, they can have a fan. Or it may be something, more broadly, that the human resources or the director says, this is a fragrance-free workplace, and they implement that for the betterment of everybody.

When we get into some other kinds of situations, it’s going to be very job specific. So let’s think about a schoolteacher. If that schoolteacher has her or his attack early in the morning – 3, 4, 5, 6 AM – then they need to work with their principal or their school to get a substitute teacher. If they have an attack during the middle of the day, they may need to have someone who knows that they have migraine who could step in quickly, like maybe a principal who’s supportive, a school counselor who’s helpful. Someone kind of on deck that can relieve them for 20 or 30 minutes. And talk to the school about a place that they could sit quietly. Maybe it’s a teacher’s lounge, maybe it’s the nurse’s office, maybe have some calm, quiet, maybe put a cold compress or a cold pack on their head, maybe keep a cold pack in the freezer. It’s going to be so personal to what works for that person and what works in their environment.

And, of course, this just expands to so many different career types. If someone works outdoors, that’s different. If they work in a very physical job, that’s very different than if they work in a quiet setting. Someone working from home may have the ability to control their setting more, their environment, their lighting, the noise level. And there may be also flexibility in scheduling, which can be very helpful. Whether someone works remotely or in person, having some flexibility in scheduling can be extremely helpful, both in relationship to attacks. As well, for many people with migraine, getting a better night’s sleep a little bit longer and starting a little bit later can be very helpful to their circadian rhythm. Especially when we think about young people, college students, teens with migraine, that little bit of delayed start can be a really healthy thing. So, accommodations are very personal to the individual and the workplace.

O’Brien: I think there are several reasons people might not necessarily feel comfortable talking about migraine with their employer. It could be internal stigma, it could be external stigma, it could be privacy, or even just that anxiety and fear with how an employer might react. Maybe they don’t know very much about migraine, but they have a lot of misconceptions. You just don’t know.

So, do you have any advice on how people can kind of process those feelings and how to prepare themselves for the conversation with an employer?

Buse: Well first off, as you mentioned, all types of stigma are very real and very prevalent. It is very common for people with migraine to feel internal stigma. That’s when someone feels guilty, embarrassed, ashamed themselves. Also, in our OVERCOME study, we have found, where we studied 100,000 people without migraine, that they were pretty judgy. Unfortunately, there’s a lot of external stigma. That people don’t realize how debilitating migraine can be, how impactful. How, in addition to headache, there are so many associated symptoms that can be really quite debilitating on their own – the nausea, the sensitivity to light and sound, the cognitive impairment. 

And it is true that people who don’t live with migraine, generally, do not understand the level of disability, and we often have to do some education around that. So that is a hurdle that when we’re already feeling a little uncomfortable about approaching someone about this medical disease, that we have to kind of get past that.

Depending on the workplace, it’s going to be a whole different setup from workplace to workplace. Some big workplaces may have very structured human resource departments, and they may have a protocol. And hey, we know you’re probably not the only one with migraine. They might have done this many times before, and you might be pleasantly surprised that you get a good reception, and it goes pretty well. 

A smaller workplace, maybe with less formal management style, where you need to talk to your supervisor, talk to your boss might feel more uncomfortable, but coming at it very matter of fact. I have a chronic disease where I have episodic attacks. Those are the migraine attacks. People often talk about them as migraine headache. There’s more than just the headache. I also can get nauseous. And light and sound odors are really uncomfortable. And this whole thing can last for more than a day.

And then you can say, to the level you’re comfortable, you can say something such as, I do have a treatment that I take at the time of the attack. And you might need to work out how that’s going to work. Can we talk about where I can take that, where I can sit, how I can get a break for X amount of time, should you be comfortable doing that. Or your doctor can put all that in a note as well. So your doctor can help you with this conversation as much as you would like. 

And then you can also talk about that the symptoms last longer than the headache phase, to the extent that you want to. You could talk about that there’s 24 hours before the headache – the prodrome – where you might also not be performing at 100 percent because it impairs your cognition. And then there’s also another 24 hours after, the postdrome. So you might want to let them know that it could be two or three days where you’re not working at 100 percent. But you can let them know if you do have treatment and you feel comfortable sharing, you can say, I have a treatment I take. I usually start to feel better within two hours. Although, you know, kind of let them know what your norm is and work with them to figure out how we’re going to fill all that in for your particular work situation.

So, if you need to be out for several hours, the rest of the day, what is your plan where you’re going to make up anything that you missed? What is the plan for someone who can kind of help and step in, fill in? That’s going to be different at every different workplace. 

But generally, a supervisor or a boss is going to really appreciate if you come with some recommendations and ideas for how you are still a vital part of this workplace. And you want to ensure that everything keeps running smoothly, and you want to work with them to do that.

O’Brien: I love that idea of coming at it, just matter of fact. This is what it is, this is what my body does and taking that emotion aside. And also, have your doctor help have supporting documents, things like that. So it’s not just me saying this. Because if they do have that built-in stigma and misconception of what migraine is, it’s not just your word versus their misconception. It is actual proof from your doctor. So that’s really helpful and can kind of set the tone for the conversation.

Buse: That doctor’s note is a game changer. Legally, it puts you in a protected place, whether we’re talking about work or school, also college, high school. That doctor’s note really allows your HR department or your boss to then realize they’re going to need to work on accommodations. And like you said, it just legitimizes – which it shouldn’t need to, but it does – that this is a medical disease. It has these symptoms, and this is what you’re living with. So it’s a great place to start.

O’Brien: All right, let’s shift gears a little bit here. We talked about having the conversation with our employer, kind of navigating our own emotions around migraine and work. Let’s talk a little bit about how our relationship with work and migraine impacts us a little bit. Oftentimes people with migraine are the hardest on themselves. We miss a day of work, we miss a work event, and then there’s that guilt, that shame.  Maybe we’re letting people down, maybe we’re really behind.

And so, then we push even harder to try to catch up, or maybe to try to bust those misconceptions that our coworkers have. There’s just a lot. We put a lot on ourselves. So do you have any advice for how we can deal or manage or process this guilt and self-doubt and get a little bit healthier, I suppose, about it? 

Buse: Yeah. Well just like we want to tell our boss or HR department this is a medical disease…it’s got a genetic predisposition, and it has debilitating symptoms, we have to remind ourselves of that. This is not a personal failing in any way, shape or form. This is a neurologic storm that takes over our nervous system and lasts for many, many hours. It’s got a genetic predisposition. It’s been around since the dawn of humankind. We’ve known about it since Egyptian hieroglyphs, so it’s not going away. It’s common.

In fact, as you look around your office place, you know, probably one in every five or six people also has migraine, so you’re not alone. 

And it’s not a personal failing. There are many brilliant people with migraine, athletes with migraine, artists with migraine, schoolteachers and bus drivers, and everyone around us filling every aspect of life who live with migraine. So, it’s not a personal failing. So we need to give ourselves a little pep talk. This is a disease. We are working with it and just remind ourselves that there’s nothing to feel guilty about. Yet, it is very common to feel guilty, embarrassed, sorry, angry.

And people also start to make decisions in their life based on not wanting to make plans, be it social, be it work, not wanting to let people down, not wanting to have to step out of something, leave something early or not perform at your best. And we call that ictus, the time of the attacks, interictal, time between attacks, anxiety, and planning decisions. In fact, almost 10% of people with chronic migraine either had fewer children, delayed having children, or no children, because they worried about being a parent with migraine. These are huge life decisions.

And the same thing happens in career and educational decisions. Because of their past experience with attacks, people get very worried that they won’t be able to fulfill responsibilities or be there or be counted on. They don’t want to let people down. So they stop trying. They stop engaging. They feel like I can’t go on for that degree or that program. I can’t take that promotion. I can’t take on that extra responsibility because I might let people down.

And I’d really like to empower people to say, hey, we’re all human. If you want to go for it, go for it. And if you miss one out of every six meetings, that’s okay. Everyone will survive. We’ll work around it. We’ve got our plan B’s. We’ll talk to our management.

We’ll make it work because I don’t want the brilliance that is you to be pulled out of all these aspects of life because of migraine.

O’Brien: I think we all need a little pep talk sometimes, whether it’s from you or from ourselves. 

Let’s look at it kind of from a different point of view. What are some signs that it actually might be time to take a step back from work or to leave a job, temporarily or permanently, or even reevaluate our career path?

Buse: Right. Those are all options at any time. And I think that when working with migraine becomes so difficult, physically and/or emotionally, someone starts to feel it and they know, and they say this is really a struggle. I’m really not performing in the way I want to. It’s not good for my body. It’s not good for my mental well-being. It’s not good for my health. It’s not good for what I’m doing in the workplace. And I think people start to feel that and recognize it is time to do any one of those things that you just mentioned from kind of taking a step back or not taking a promotion or a next level to taking a temporary disability or temporary leave, or deciding it’s time to actually move towards either a permanent disability or leaving a job or a career.

O’Brien: I do want to be mindful that some people out there who will be watching this episode, people out there with migraine, they just might not have a choice. They might not have an opportunity to reduce their hours, to change their job. They’re simply trying to get by in the world, to earn income, to support life. They’re just doing their best to hang on, and they might not have the opportunity to do something else or to take time away from work.

Buse: Absolutely.

O’Brien: For people in this situation, do you have any type of advice or suggestions for how to manage migraine and all of the emotions that come in with it and also stay employed in their job?

Buse: Absolutely. For some people, there really is not a choice to take a different path. They need the financial income to care for themselves and their family and whomever they’re caring for. And there just aren’t a lot of other choices. In that case, it’s really important that the person has seen a doctor, they have their proper diagnosis, they’re getting an optimized treatment plan, personalized treatment plan so that we’ve got the treatments working the best that they can. That doctor has helped write a note to HR or someone in their workplace who can help with accommodations. They need to take advantage of all the legal accommodations that they can to not lose any income but keep their job. And see if there’s any flexibility, whether it is in terms of hours or flexible schedule or the accommodations at work, anything else that can be tweaked to help them manage and continue their job.

O’Brien: Many in the migraine community, even myself included, have had to step back from jobs that we have loved. And that really comes with a lot of emotion. I know I’ve spoken with many in the migraine community that said, I just couldn’t do that anymore, so I found something new. So, when leaving a job or career or having to make these big changes because of our health, because of migraine, it really can take a toll. I have often said, and I’ve heard others in the community mention this, that leaving a career or a career path is often a lot like grieving. I know that I was grieving what I wanted, what I thought I was going to be, what I thought my career was going to be, and it was really difficult.

So I want to know kind of what your thoughts are on having to make that change, and how do we process that?

Buse: Exactly. I think it’s important to process the loss and the grief in all of the ways that you do that. Feeling sad, feeling angry, feeling frustrated, feeling disappointed, all of those feelings together that your life is not the way you wanted it to look. Your work isn’t now the work that you were moving towards. It may not have been the way that you imagined your career looking or what you want to give to the world. And all of the identity and pride and passion that you have or had about that career may be lost. And so it’s really important to respect that this is a major loss for many reasons. And that it is completely expected and human to go through this feeling and this process of feeling the grief, the loss, and taking time for the transition.

One thing I love is that you mentioned many people that you work with went through this process and had this very painful transition. And yet, here you are doing something very valuable in the world using your skills, using your skills in broadcast journalism, using your skills in education, your advocacy, and you found a different path. So it wasn’t that you left your other career and never contributed in your profession again. You had to make it look different and find something that worked for you, and you did that.

O’Brien: Thank you for that. And how do you think that people can rediscover that sense of purpose or that sense of fulfillment in their work, whether it’s something new that they’re doing or even if they have to take a step back from what they’re already doing, while still doing their best to stay healthy and to manage their migraine in an appropriate way for them?

Buse: Well, that’s going to be fluid over time. Life with migraine is a long journey. We go through many developmental stages and ages. And things change. We have times of higher frequency, higher intensity, and times of lower frequency, lower intensity. So, when leaving or pausing or changing your career, it’s important to have that time to grieve and process and feel all those feelings. And then, when you feel ready, think about what do I love doing? What do I care about? What am I good at? What are my natural skills and aptitudes? And look around your world and see where there might be places to not only get your needs met but give back to the world again. It may be in a paid full-time profession, a paid part-time profession. It may be volunteering. It may be caregiving for people in your family or community.

There’s so many ways that we can contribute to the world, and they all look different. And what you choose to do next will probably not be the last thing you ever do. It’s just your next thing. So, kind of navigating when you feel like you’ve gotten through the time that maybe you were having worse attacks, more frequent, more refractory, and you really needed to get that managed. Maybe it stays like that for a long time. And the amount of time and effort and energy and commitment you can give to something else is less. Or maybe you feel like as you kind of ride through these different ups and downs of life with migraine that you get back to a better place. And you kind of have already started exploring how else can I give all the good stuff I’ve got inside in the world? And you start looking at what that might look like for you.

O’Brien: Dr. Buse, thank you so much for being here today. We really appreciate all of your insight and knowledge in this area. And we thank you for all you have done and continue to do to help support the migraine community.

Buse: Thank you for having me on today. I really appreciate the opportunity to talk about this important topic. And I want to thank everyone who joined us.

O’Brien: And that wraps up this episode of Spotlight on Migraine. To all of our followers, thank you for listening. Don’t forget to hit like and subscribe. This episode was made possible by supporters like you. You can make a tax-deductible donation today @migrainedisorders.org.

I’m Molly O’Brien with Spotlight on Migraine. We’ll see you next time. 

*The contents of this podcast are intended for general informational purposes only and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. AMD and the speaker do not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.