In this episode, we talk with Dr. Meghan Mills and Ingrid Pfau about epilepsy and invisible disabilities, as part of our Invisible Disabilities Series. Dr. Meghan L. Mills is a scientist in the UAB School of Health Professions Research Collaborative. She earned her PhD in Medical Sociology from the University of New Hampshire and currently serves as Principal Investigator of a NIDILRR-funded study examining healthcare accessibility for service dog handlers. Dr. Mills brings a unique combination of professional expertise and lived experience to her work. Diagnosed with drug-resistant epilepsy at 11 months of age, she has spent her life navigating the challenges associated with a largely invisible disability. For the past eight years, she has been partnered with a seizure alert and response service dog to support her safety, independence, and participation in daily life. This combination of personal and professional expertise provides her with a distinctive perspective on disability.

Ingrid Pfau has worked with NCHPAD for a little over 11 years helping make all kinds of films. One of her favorite parts of filmmaking is meeting other people with disabilities. Ingrid was also a model in NCHPAD’s Every Body Blooms fashion event in April of 2026.

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Episode Transcript

Quick Navigation (click the linked text below to jump to a new section)

• Intro
• How epilepsy has shaped their lives
• The challenges of living with epilepsy that may not always be visible
• How epilepsy has influenced Meghan and Ingrid’s independence, confidence and approach to everyday life
• How epilepsy can look very different from one person to another
• How service dogs have had a positive impact on Meghan’s personal and professional life
• Ingrid and communicating epilepsy through visual storytelling
• Epilepsy and travel preparation
• What the term “invisible disability” means to them
• How employers, schools, businesses and community organizations can better support people with epilepsy
• Final thoughts and takeaways from Meghan and Ingrid

*Edited for clarity*

Host 00:03

Welcome to Wellness, Health and Everything Else: a NCHPAD Podcast. NCHPAD is the National Center on Health, Physical Activity and Disability – the nation’s premier center dedicated to promoting the health and wellness of everyone. In each episode, we explore topics at the intersection of health, wellness and mobility limitations. If you have an idea for a topic, would like to learn more about a topic or are interested in our free resources, programs and partnership opportunities, email us at nchpad@uab.edu, give us a call at 866-866-8896 or check out our website at nchpad.org.

Music Interlude

In this episode, we talk with Dr. Meghan Mills and Ingrid Pfau about epilepsy, as part of our Invisible Disabilities Series. Dr. Mills is a scientist in the UAB School of Health Professions Research Collaborative. Diagnosed with drug-resistant epilepsy at 11 months of age, she has spent her life navigating the challenges associated with a largely invisible disability. For the past eight years, she has been partnered with a seizure alert and response service dog to support her safety, independence, and participation in daily life.

Ingrid Pfau has worked with NCHPAD for over 11 years and is currently the Lead Video Producer, helping make all kinds of films. One of her favorite parts of filmmaking is meeting other people with disabilities. Ingrid was born with cerebral palsy on the right side of her body and has active complex partial epilepsy, diagnosed when she was 18 years old.

Ingrid begins by sharing her experience with epilepsy and how it has shaped her life, followed by Meghan sharing her own perspective and experiences living with epilepsy.

Ingrid Pfau 01:43

Epilepsy has shaped my career path a lot of it, actually. When I went to school at UAB, I thought I was going to become a doctor, but then when I started having seizures, I said no to that and decided to become a filmmaker, actually. Pretty much, environmental filmmaking was my career path, and that’s why I went to get an MFA, Master of Fine Arts and Natural Science Filmmaking, at Montana State University. And by the time I was graduating, I was making a film about epilepsy, Seizing The Unrecorded; I was having 12 seizures a day. Some of them were tonic-clonic seizures; most of them you would think of as grand mal seizures. And I decided to come back to Birmingham right away because I knew UAB had a good place to treat epilepsy. And then coming back here, I had one year where I was helping teach classes as a TA and some other freelance projects. But then I found NCHPAD, and so I started in 2015 working for NCHPAD through Lakeshore Foundation, so National Center on Health, Physical Activity and 
Disability. I guess that’s just career-wise how epilepsy’s changed my life.

Dr. Meghan Mills 03:09

Yeah, so career-wise, my epilepsy very much shaped what I got my doctorate in. So I spent a lot of time as a child in hospitals around healthcare workers, having numerous medical procedures and surgeries, and I think just experiencing that really eventually led to: One, me wanting to be a sociologist because I always felt a little different from everybody else. So, studying, as an outsider studying the social behavior of others, which is what sociologists do, became really interesting, right? To kind of understand why people do what they do, and yeah, just kind of trying to understand that as somebody who felt different or as an outsider because of having epilepsy. And then I think the other aspect of growing up in hospitals, spending a lot of time around healthcare workers, on one hand, seeing really good doctors and nurses who were essential to my recovery and my entertainment and happiness as a child, and then seeing the flip side of that. So, seeing like my parents struggle with trying to advocate for everything I needed and understand all the medical jargon, and kind of navigating a really complex healthcare system. Really, the combination of those led me to being a medical sociologist. So really looking at inequity and accessibility in the healthcare system. And then once I got my doctorate, my lived experiences as a person with a disability really led me specifically to my eventual focus, not just in health disparities more broadly, but in health disparities based on disability status. So, how people with disabilities face unequal access to healthcare and unequal treatment and ultimately have unequal life chances because they have a disability.

Host 05:24

Here, Meghan and Ingrid discuss some of the challenges of living with epilepsy that may not always be visible or understood by others.

Dr. Meghan Mills 05:32

So, the way I think about the visibility of disability- so, kind of invisible or visible disabilities- is that, as somebody with a largely invisible disability, I think that comes with a lot of privilege on one hand. So, meaning, for example, unless someone sees me have a seizure, I really don’t have to disclose my disability or my health condition, my medical diagnosis, to other people. So, when I’m in situations where having epilepsy or having a disability would lead to discrimination or disadvantage, I largely can hide it. I can do what in sociology, Ervin Goffman calls passing. I can pass for able-bodied, which brings a lot of privilege. 

On the other hand, as somebody who has lived the majority of my life with an invisible disability, the challenge or disadvantage comes in facing more barriers, particularly skepticism and questioning of [whether] you really have a disability or not, particularly when it comes to needing things like academic accommodations as a student or workplace accommodations as an employee. There seems to be, in my experience anyway, a lot more barriers or hoops you have to jump through to prove that you quote unquote deserve or need that accessibility or those accommodations versus somebody with an apparent or visible disability.

Ingrid Pfau 07:12

I will say, based on what Meghan is saying, that we have very different types of brains. I guess very different types of epilepsy. The thing about invisible disabilities, in particular epilepsy, is that there are like over 30, if not 40, types of epilepsy. So, a lot of times, my seizures are still very frequent. And so, if I’m meeting a person for the first time and I’m going to see them for the whole day or the next day, I have to disclose that I have epilepsy, so that they don’t freak out and they don’t call 911. So, a lot of times I can’t exactly hide it. I wish I could hide it. I mean, I’ve had thousands of seizures. I’m sure Meghan’s had hundreds, if not thousands, as well. But I mean, even this past week, I’ve had over 10. Only one where I was falling, but the rest of them were still scary. You know, put you to sleep, etc. But they’re just part of my life, and I wish people knew that there are just different types of seizures, and that you don’t have to be scared of every single one of them. The person can be unable to talk properly afterward, or not know where they are afterward, even if it’s not a tonic-clonic seizure. And the best thing that a person should know is to just stay with that person. Stay with that person so that they don’t do something silly, such as walk into the road or accidentally hurt themselves by falling. You may think that person’s back, but with me in particular, and with other people that I’ve met with epilepsy, sometimes you really just don’t even know who you are.

Host 09:00

The conversation turns to how epilepsy has influenced Meghan and Ingrid’s independence, confidence and approach to everyday life.

Ingrid Pfau 09:07

Sometimes I feel like I am fully independent, and other times I really don’t feel independent at all. The most independent, as far as walking goes, is actually at work. I feel very safe walking here on Lakeshore’s Campus. Although oftentimes I ask to walk with another person just to be safe. But at home, for example, I’m not allowed to walk around the block by myself. I’ve had too many accidents that have scared my mother and my twin sister. So there are certain things I can do by myself, like making breakfast for everybody. But I have to be careful about what type of cup I’m using to make tea or something that’s hot. So, I use very enclosed things, like it’s called a Contigo. Like, it can be dropped on the ground. And yet the water doesn’t hurt. Otherwise, I have spilled literally boiling water on myself by accident. That’s just an easy way to accidentally hurt yourself. So just little bruises, etc., that you find after a seizure, and you’re like, “What just happened to me? I don’t even know what happened to me.” I probably have like two on my leg right now, and I have no idea what happened. Maybe somebody saw what happened, but I don’t know what happened. That’s the interesting thing about having epilepsy: you don’t remember it, or at least a lot of seizures you don’t remember them. I know some people have seizures, and you can remember everything. And to the first point or the first question, I probably had epilepsy before I realized I had epilepsy, but it was the kind where you were able to remember everything. So, they were only visual types of seizures, of seeing stars and little black spots going across my eyes for minutes at a time, and I thought it was just kind of intriguing and just something that was beautiful that all children had. But I was just thinking that was what it was. But it was probably a type of seizure.

Dr. Meghan Mills 11:14

Listening to Ingrid -and I think this is a question or something we’re going to discuss later- but one of the really big differences is me having a service dog and being partnered with a service dog for the last eight years. When I think about how epilepsy impacts my independence, my confidence, and my everyday life, because —and just a big transition— before having a service dog and now having a service dog for my seizures, I have a lot more independence, a lot more confidence, and a greater overall quality of life. Before having a service dog, I was very self-conscious, had a lot of social anxiety, very painfully anxious and shy because of always having that fear of having a seizure, which I primarily have tonic-clonic or grand mal seizures with no warning, and one, of course, falling down and hitting my head was the biggest concern because of the number of concussions and traumatic brain injuries I’ve had, but also just that social aspect, right, of being embarrassed. 

So particularly when I was a college professor for 15 years, I really enjoyed giving presentations in front of large groups of people, and just that fear of embarrassing myself, falling down, not knowing what’s happening, people panicking. I definitely wish there was greater education on what to do if you see someone have a seizure, especially the stereotypical dramatic grand mal or tonic-clonic seizure; it tends to understandably terrify people, and they panic, and they call 911, and they do a lot of things, trying sometimes to put things in your mouth or get you to drink water, that are very dangerous to the person seizing, but also I think people are trying their best. And they just aren’t educated on, basically, seizure first aid or seizure response. 

So, I think the other thing is that when I think about how my seizures impact my independence and confidence in everyday life, all that’s been improved, of course, with a service dog and being able to have at least 20 minutes in advance to remove myself from a social situation. I’m a really private person. Whenever possible, I don’t want people to see me seize, because I’m very self-conscious of what I look like seizing. I don’t even like to see videos of myself seizing, and so that’s really given me a lot of that freedom. 

But there are definitely certain situations that my family and I are still very aware of as being really dangerous. So swimming, which is something I love to do, and I swam competitively in undergrad. I’m a bit stubborn, so when someone tells me something is dangerous, or I shouldn’t do it because of my disability, I tend to gravitate towards that. But so, things like that, even with a service dog, I’m very aware of, and usually have a “service human,” or somebody who obviously knows me well, knows my diagnosis and knows what to do. Swimming, of course, is a big one, and driving or operating any kind of large machinery like that. And then also flying, not because I’m flying the airplane, but because there is a high likelihood that if you have a grand mal seizure on an airplane, they may emergency land the airplane. So again, that unwanted attention or focus on me because of my seizures is something that makes me incredibly self-conscious and uncomfortable.

Ingrid Pfau 15:22

I am not allowed to drive. I haven’t driven since, like, forever, I’d say, age 18. And I know why I’m not allowed to drive. I hate it when people with epilepsy try to drive, and then they crash their vehicle, and they know that they really shouldn’t be doing it. And I’ve met a couple of people who do that, and I mean, it’s illegal for a reason. So, I’ve just accepted that for some social things, it makes it a little bit harder when you’re not allowed to drive, at least in a city that doesn’t have good public transportation. And then I’m also a water baby, so I love swimming. I love water skiing whenever I can, and I know that when I water ski, there is a great possibility that I’m going to have a seizure. But I don’t care. There’s a reason why I’m doing it, and it’s just that it feels great. And I know that when I swim, there’s usually somebody there with me, especially working here and working at Lakeshore first. They did not let me in that pool ever without somebody else being near me. Even if there are lifeguards there, they still want you to be with somebody because, like, yes, it’s illegal for a lot of people to drive who have epilepsy, and it’s also illegal for people to scuba dive. And I didn’t even know that when I was taking a scuba diving lesson at UAB.

Host 16:49

Epilepsy can look very different from one person to another. Meghan and Ingrid explain what they wish more people understood about those varying experiences.

Dr. Meghan Mills 16:57

I think what is most important for people to understand about people with epilepsy is that there are hundreds and hundreds of different types of seizures, and most people are familiar with grand mal or tonic-clonic seizures. It’s the most dramatic. It’s what if you’ve seen a seizure in a movie or a television show where someone basically falls to the ground, and all their muscles or their large muscle groups tighten, restrict, and unrestrict, and it’s dramatic and violent. That happens to be the predominant and currently the only type of seizure I have. But with that said, the majority of seizures don’t look like that, and so most of the time, people have seen someone have a seizure, been with someone who had a seizure, especially maybe an absent seizure, and they didn’t even realize it was happening. They thought maybe that person was just spaced out or acting a little weird, especially with children. 

So I wish people were more educated on that and more aware of that. Especially again, if they’re around children, because a lot of times children are having seizures, they can’t communicate that, or young babies or children, and it’s taking them a long time to get that diagnosed and to get that understood. 

I think another common stereotype about seizures that I run into, and it’s coming from a good place, is that everyone with epilepsy is photosensitive, meaning rapid light movement, flickering of lights, things like that. That’s really only about 10% of people with epilepsy who are photosensitive, or their triggers are directly -I’m sorry- their seizures are directly triggered by photosensitivity to light. So, on one hand, I think it’s really important that people tend to be aware of that, and movies and things like that, amusement park rides, that those warnings should absolutely exist for photosensitive people, but that that is not the case with all people, including myself. So, I, in the past, for example, have had friends not invite me to go on an amusement park ride with them, or to go see a 3D movie with them, just making the assumption that I can’t because of my epilepsy, which for me individually is not the case. 

I think the other major misconception or stereotype of epilepsy that I’ve encountered a lot is that people with epilepsy are somehow less than people without. So sometimes stereotypes are that they can’t be as intelligent or that it’s always associated with, like, an intellectual or developmental disability, but also just that people with epilepsy more broadly can’t live equally fulfilling lives and do the things they want to do. Whether that is being an athlete or getting a doctorate, or becoming a medical doctor. I think there are still stereotypes that that I’ve run into are misconceptions that I’ve run into that people with epilepsy just cannot achieve as much as somebody without.

Ingrid Pfau 20:31

I mean, it is true that sometimes, like when you’re applying for a job, etc., if you have seizures, they get a little bit more scared of hiring you. I’ve actually had that happen to me. Got hired, then I had a seizure, and then they fired me right away. And that was just for a freelance job. Epilepsy definitely can look different from person to person. I think it’s kind of beautiful in its own way. It does make it hard for a neurologist to actually prescribe some type of medicine or some type of treatment from person to person because it’s not exactly like there’s one medicine for epilepsy. I mean, I take three. I’ve taken 10 other ones before. I would love not to be taking medicine. They do help out a little bit, so I accept them, even if they have some other side effects to them. 

The thing with epilepsy and getting treatment is that you have to sometimes trust that it will help, because even if you’ve had those deep conversations with your neurologist about, “Are you experimenting with my body?” They’ll say yes sometimes because it is an experiment actually, on how much medicine they’ll give you or what type, or whether you’re able to accept a VNS (a vagus nerve stimulator) or a deep brain stimulator, or an RNS, or even surgery for part of your brain to be taken out. I mean, usually it takes not just one neurologist, but multiple neurologists to figure out what’s the best way forward for you. And a lot of times, I think that the fact that there are, like, millions of people- not just 1-2-3-4 thousands, but like 65 million or more people with epilepsy- I mean, it can look very different from person to person. And just like Meghan was saying, a lot of times it can be unnoticed because, I mean, I have absent seizures sometimes, and then I have the type that is very much like, okay, she’s going somewhere. Where is she going? And I also have the type that’s developed where it’s almost like a tonic-clonic seizure where I fall. And I mean, my seizures are coming from three different parts of the brain, and not everybody has the ability to go to the doctor and find out where their seizures are coming from, which is kind of sad. I mean, we just don’t have enough neurologists that focus on this subject. There probably just needs to be more funding for it. 

I don’t even think I have real anxiety towards seizures because I’ve been very vulnerable about them and have let people from all over this nation see three movies I’ve made about having epilepsy. I think that really helped me accept it. I mean, I’ve seen some people have seizures, and yes, it is a little bit scary when somebody’s having a tonic-clonic seizure, especially if it’s yourself, but you don’t really remember that. But I really wish people realized how many types of seizures there are, and that even if they think I’m back, I’m not really back. If that makes sense, because a lot of times people leave and they don’t even realize that I’m still having a seizure or I’m still in that phase. That’s the main thing. If anybody’s having any type of seizure where they don’t have their memory back, you really have to double-check with them if they’re back.

Host 24:17

Meghan discusses the important role service dogs play in both her personal and professional life and the impact they have had on her experience with epilepsy.

Dr. Meghan Mills 24:26

So, I have had a public-access-trained service dog for eight years now, named Arrow. He just turned nine years old and is getting near retirement age, so I currently have a one-year-old service dog in training, Arlie. And before Arrow, I had a pet, Dante, who naturally started alerting to my seizures, and I just got him as a pet. He started conveniently barking about an hour before I had a seizure, and that was a life-changing pivotal moment for me because when Dante started doing that, I was aware of service dogs, particularly guide dogs that help people who are blind or hard of seeing, navigate their world, but was not familiar like I am now, of course, of all the different types of medical alert and response dogs. And so, Dante sent me on this journey of learning that a service dog was an option to help people like me with epilepsy, and particularly Arrow as my first public access trained service dog. Meaning, he goes with me everywhere the general public is allowed to go. So, to work, school, doctor’s appointments and shopping. 

I wish more people realized how life-changing service dogs can be for people with all different types of disabilities, particularly for increasing their independence, and that service dogs are a type of assistive technology for people with disabilities. So, similar to somebody who may use a wheelchair or a walker or have a cochlear implant, or the example most people are familiar with, use eyeglasses to help them see. And I wish more people would realize that service dogs fulfill that same importance for people with disabilities. They are essential and necessary for them to navigate their everyday lives. And I also feel very strongly about people abusing service dogs, fraudulently presenting untrained pets as service dogs and taking them places that pets are not allowed to go, because that reflects so badly on people like myself who have and need a legitimate service dog. It also means that people with service dogs experience more discrimination because when they go to the same grocery store that someone previously took a pet into with a vest on that says service dog, and then that pet proceeded to pee on the merchandise or to be aggressive to a child in the store. It makes my life harder because I am just trying to do what everyone else is doing and grocery shop, and I now have to advocate and educate and experience discrimination because of the type of assistive technology I use.

Host 27:57

Ingrid shares how she uses poetry, imagery and film to communicate the experience of epilepsy and why visual storytelling has become an important creative outlet for her.

Ingrid Pfau 28:07

Epilepsy through art, I think, is essential for many people, not just me. I’ve met, I feel now, at least 100 artists with epilepsy working with Hidden Truths, and they are out of California. It’s called the Hidden Truths Project, and there’s also another neurologist involved at first. Then I met him during one of my first videos with Seizing the Unrecorded, and I got to show that film through them. That was my first time working with that particular group, and I’ve done at least four different art projects with them. I think that a lot of people enjoy drawing it out or writing it out in a more poetic form, simply because they don’t want to think of it as something purely medical. 

There are a lot of ways to describe epilepsy, and if you don’t have the right words for it. Why not draw it? I mean, there are some beautiful pieces. Vincent Van Gogh is one of those artists, and if you look at those particular drawings or paintings of his, I mean, you can see epilepsy all over that, and he was just portraying it in a nice, beautiful art form. But that’s just like an interesting way of portraying seizures, and some people really do have seizures just like that. I’ve met a couple of people who know what’s happening during the seizure, and of course, it’s something that’s imagery. I think of it as a way to be creative and just have fun with the subject. Instead of feeling like, oh my gosh, this is the end of the world. I have seizures. No, you can have fun with a subject and meet new people when you’re making a piece about it. And I mean, I’ll have one piece going in October. It’s always fun to see different people just look at a piece and then have their interpretation. There’s one piece that I made with my twin sister a couple years ago, and it’s a beautiful piece that has the SEG in there, like 14 electrodes that they had put in my head, and then it has one drawing of me, and then one drawing of my twin sister, and it’s a beautiful piece. That’s just my fun way of looking at the subject of epilepsy versus looking down on it.

Host 30:55

As frequent travelers, Meghan and Ingrid describe how epilepsy influences the way they prepare for trips, navigate unfamiliar places and prioritize their health and safety.

Ingrid Pfau 31:04

Traveling with epilepsy is a little hard, but it also can be pretty easy if you have people that you can travel with. For me, I don’t have a service dog, so I always travel with someone when I’m able, especially if it’s a family member. I’ve traveled to at least 10 different countries. My mom is from Chile, so I guess that was my first time out of the country. And then I guess as I got older, I’m 37 now, about to be 38 soon. So, I’ve traveled every single year besides COVID years outside of the country simply to be there and experience something new, and that’s just something that I want to happen. I don’t mind the cost of it; it’s just part of my being of experiencing the world. 

As far as work, I’ve traveled to at least different states, and I’ve even faced discrimination because of traveling. Like if I’m having a seizure in front of a person getting on a plane, they get like, “Oh my gosh! Is this person high, etc. What is happening to this girl? Are we even going to let her on this plane?” My coworker Chase had to deal with that in Seattle because I looked very high, or like I had drunk something, but I was just coming out of a seizure, and he had to defend me quite a bit to let me on that plane. So, as far as traveling with a person, that can be very good. But you also have to realize that sometimes you can call the airline and let them know that you have epilepsy, and they can walk you through and have you go in before other people if they realize that. So, it’s an invisible disability, but they’ll still think of it as something that lets you get on a plane a little bit earlier than other people if you’re willing to tell the airline a little bit before.

Dr. Meghan Mills 33:22

So, for me, a lot of my ability to travel independently is based on the fact that I have a service dog. And Arrow, in the past eight years, has been a full-time service dog for me. We’ve easily done about 100 flights. He is a frequent flyer, and he is great at flying. But it does require a lot of additional preparation on my part, more geared to making sure he can be accommodated and fly safely and travel comfortably. So then, he in turn can support my health and independence. So, just a lot of considerations like when I’m booking the flight, trying to get the least travel time. So ideally, direct short flights are always a priority when I’m looking at flying for travel. I do fly for work, but also for personal reasons. So really, looking at his comfort time from leaving our house to getting to our final destination, a lot of questions around his mealtimes, his need to use the bathroom, finding a service animal relief area if we have a layover in an airport, but also, he’s a bit picky and will not go number two in a service area relief. So just being very mindful of his comfort. Do I have his backpack? So, his food and everything he’ll need for the travel, his water bowl. So, my priority, particularly when I fly, is always his comfort. So, a lot of preparation goes into that.

One of the challenges of flying for work as somebody with epilepsy, or probably for any disability, is that if work is going to book that flight, it requires you to do a lot of self-advocacy. So, he has paperwork that needs to be submitted in advance of a flight. I also need a certain kind of seating on the airplane; I can’t be in the emergency row exit because of my disability and because of the type of assistive technology I use. But also, he, although he’s only 28 pounds, I need a seat that is appropriate for him. He lies tucked at my feet. But putting us in a middle seat between two people is not usually a great idea, but of course your employer is not going to pay for the increased fees to pick your seats, right? So, typically every time I book a flight- I did this recently; I’m flying to D.C. next month to present at a conference for work- it’s a lot of advocacy and polite pushback to people that this is how we do it. You have to have the baseline seat. You can’t pick your seat and say, “I do need to do these extra things. I do need to pre-board because of my disability and because I use a service dog.” As Ingrid mentioned, you need to call the airline’s disability assistance or disability support team, and each airline has its own. Just contact them and make sure it’s on your reservation in advance. So, I would say, compared to somebody without a disability, travel, particularly airline travel, requires just some extra prep work. 

The other side of it for me is I am fiercely independent. So, although I have people I could travel with- friends, family and loved ones- I love to take a weekend road trip completely by myself. Usually with my dogs, so not just my service dog, but my pet dogs. We travel often and compete around the Southeast as well as nationally for dog agility. And so, my service dog and his comfort again is essential to that. But the fact that I have a service dog is what allows me to do that independently as somebody with epilepsy, and I’m very, very grateful for that. That is life-changing because doing those things independently without another human is really important to me.

Ingrid Pfau 37:56

The thing is also, as far as travel goes, you have to be on that other person’s schedule, and that’s really hard. I mean, I wish I could drive. So, I do use Uber and Lyft when I can, but it’s not like I can do it every single day because that’s sometimes $120 for that day. That’s $30,000 for that whole year if I were to come into work. So I appreciate that I’m allowed to work from home some weeks, and then part of the time come in because, I mean, who wants to pay $30,000 for Uber or for Lyft? I mean, I wish that there was like a different way to make transportation easy. And I have found certain people at work that help me get home sometimes when I really need it, and I appreciate that a lot. So, I’ve gotten to know a lot of different people over the years, people with more visible disabilities that have dropped me off, etc., at home. So, a lot of people, at least 10 people at work, have driven me home when I really need it. So, there are just different ways of traveling around, and you just have to accept that you’re on a different person’s schedule if you’re not able to transport yourself independently.

Dr. Meghan Mills 39:24

So earlier, Ingrid was talking about international travel, and that’s one more thing I wanted to add. But because I am dependent on a service dog, particularly for flying, I would not fly without a service dog for fear of having a seizure without knowing, being embarrassed, and the potential for them having to emergency-land the plane. I currently- and I was talking to Ingrid about this the other day- will not travel internationally, which is something I would love to do again. When I had a break in seizures, I went to England; I went to Ireland. I would love to go back to those places, but different countries have different laws around service dogs and their certifications and vaccinations and mandatory quarantines. And I also just would not feel right or feel it was ethical to ask Arrow to do a 10–11-hour flight right now. So that is a place I am limited because of my epilepsy and the type of assistive technology I use.

Host 40:35

Meghan and Ingrid share what the term “invisible disability” means to them and how it connects to their experiences living with epilepsy.

Ingrid Pfau 40:43

The term invisible disability means just something that isn’t seen by everybody. I think of it as hidden disability more so, would be the way I look at it, but I don’t want it to make you feel as though, or make someone feel as though they need to hide that disability, if that makes sense. Especially if it’s something that will benefit them if they need to talk to somebody about it or go on one of those walks that they have for epilepsy that they have probably in November, etc. There are thousands of people that come out in Birmingham and thousands more that go out in D.C. that all bond with family members and people with epilepsy just talking about it. And I don’t think it’s something that you need to hide. I mean, there are so many groups online. Like, I was just looking at them earlier today, and people are just talking about it, even with the most random stranger, just to feel a little bit better about themselves. And I mean, I think it’s just something that doesn’t deserve to be hidden. It’s something that needs to be talked about, especially if it makes the person feel better. I mean, I can understand why, for example, if you don’t have a seizure for like a month or two or three, you don’t need to talk about it at all. I mean, because epilepsy, in a sense, sort of can be “healed”, but at the same time, it can always come back.

Dr. Meghan Mills 42:26

To me, the term invisible disability means a disability or disabilities that are not readily apparent to others unless you disclose that information to them. So, there are other terms I’ve heard. Hidden disability or non-apparent disability, and I think that’s really important when you think about disability identity. And then some of the research I’ve done, although specific to service dogs, is about how people with different types of disability are treated. 

In society, there is basically a hierarchy, right? And there’s been a lot of research published on this that some disabilities are more socially acceptable. So, for example, an invisible disability that is discriminated against the most is a psychiatric disability, so there’s more stigma. People with something like bipolar disorder, for example, are less likely to tell people that, and it is changing over time. But they’re less likely to tell people that because of the stigma or the discrimination they might experience; they may be more likely to be held responsible for that disability or told, “Get over it, it’s all in your head,” things like that. 

So, I think what is interesting with epilepsy is because it has a physical or biological [basis], right? Objective science can diagnose it; it can be measured and diagnosed. It’s an invisible disability, but one that is more socially acceptable, right? So, an example of that is I have a friend that has, and the terminology changes a lot, but she has non-epileptic seizures that were-I don’t know if they still are-but they were called non-epileptic or psychogenic or psychiatric-based seizures. And just the way doctors would treat her versus me was wild. So, I felt like I had the privilege or the benefit of having an official, “real” diagnosis of epilepsy. So I was treated with a lot more respect by a neurologist, and because I had something that showed up on an objective test and had the official diagnosis, I was taken more seriously. And treated more favorably, where she was told, “This is in your head,” and “you’re imagining it,” and that “these aren’t real seizures,” and things like that. So when I think about the visibility of a disability, I think a lot about how society perceives and treats that person. 

In my own research with service dog handlers, what I found, or what the data found when we surveyed 500 people with disabilities who use service dogs, is that people with invisible disabilities who use service dogs experience significantly more skepticism and discrimination than people with visible disabilities who use service dogs. So, people like myself are more likely to be questioned [about whether] our dog is a real service dog, [or whether] we are really disabled because we “don’t look disabled,” whereas one of my other friends uses a service dog but also uses a wheelchair. When we go to the same restaurant, both with our service dogs, she’ll be let in with no question, and I’ll be questioned, or be told that my pet is not allowed in the restaurant. And so, again, when I think about the visibility of a disability, it really shapes your experiences and the way society sees and treats you.

Host 46:26

The discussion explores ways employers, schools, businesses and community organizations can better support people with epilepsy and other invisible disabilities.

Dr. Meghan Mills 46:34

I think the starting point for supporting people with epilepsy is education, and that’s for all invisible disabilities, not just epilepsy. So, really, disability awareness in general is really important as far as the type of terminology to use, how to talk to people, how to treat people respectfully. How and where to disclose disability, all of those things. But I think specific education on different types of disabilities, particularly coming from people with that real-life lived experience, is really important. And I think ultimately remembering that not all disabilities are visible or apparent is a really important thing that is not educated enough.

Ingrid Pfau 47:32

I agree with everything that Meghan just said. Basically, I think there’s always a way that you can be trained on how to treat other people who are having seizures, or get the certification, is the right word. I think that’s pretty easy for people, at least in high school, even in college, to understand how to do that. And I agree completely that people with invisible disabilities should tell their stories, even if it’s just through a film or in person. Of course, it’s better if they have the opportunity. I’ve been able to speak in different locations about having epilepsy. 

As far as all the invisible disabilities go, there’s such a range. There can always be the ones that you think of that are just mental, inside the head. But then, like, even certain forms of MS, for example, are very invisible until there’s something that happens, and then you realize, okay, that person actually has a disability. Even a TBI, traumatic brain injury, looks invisible to a lot of people. 

One thing that we haven’t really talked about is that, like, epilepsy can make a person very much have Todd’s paralysis. I mean, that’s happened to me multiple times. I’m thankful that I haven’t had that in a long time, and I had it happen many times, actually, when I was in Montana, and I didn’t even realize it. I just couldn’t get out of bed. I couldn’t move after a bad night of probably having some seizures. I mean, you can’t do anything about it, really. You just have to wait it out, and you have to be able to be ready for your ability to move again. And I mean, a lot of people really need to know that you can do a lot of things with epilepsy, but you also have to be prepared that you can have something like SUDEP, so sudden unexpected death in epilepsy patients. That’s what the term is, because that is very true. I mean, if you don’t have enough oxygen going to your brain, and if it happens for too long, then something may happen. I mean, a lot of times, I try not to think about that. At all, because I know that, like, I seem to come back after every seizure, but I do know that, if something bad were to happen to me during a seizure, I wouldn’t know it. So that’s how I keep my brain positive about it.

Host 50:18

To close the conversation, Meghan and Ingrid share their final thoughts and any messages they hope listeners carry with them after the episode.

Ingrid Pfau 50:25

I just hope that people listening to us are taking away the real message here, and the real message is that you can do a lot of things even if you have epilepsy or a hidden disability. Yeah, there are some scary things that can happen, but just realizing that you sometimes need to have people around you or have someone close by. Like, I never lock the door when I am going into the shower. They don’t go in with me. Sometimes seizures are so severe that, for example, you’re never allowed to take a bath by yourself. You have to be open to having a companion, either it’s a human or a dog, and you can do most anything. I mean, I’m very proud of the fact that I have a full-time job and that I’ve traveled all over the world, and that epilepsy needs to be accepted as a disability and not misunderstood as something to be scared of. Because a lot of times people are really scared, and it’s great that people care, but they really need to realize what not to do.

Dr. Meghan Mills 51:43

I think a final takeaway when thinking about people with epilepsy or other invisible disabilities is to listen to people in your life and who you know that have disabilities of any kind. Listen, ask them questions. There’s no one-size-fits-all. So, although education, training, and researching the things are really important, the same medical diagnosis. So, for example, epilepsy looks so different, and what that person might need and how it impacts their daily life is going to look so different. So, I think a really important takeaway is to remember that, and to really, if that is somebody you work with or a family member or somebody you’re really close with, to really get to know them and ask them what they need, what their disability looks like for them, and how you can be as supportive as possible for that person.

Ingrid Pfau 52:54

And I’ll add to that simply in the fact that, like, for anybody that’s diagnosing epilepsy, the doctors, etc. I hope that people learn to actually listen to their patients as people, and not just patients. And not just to give them a pill, as though that’s going to be it. I know that there are thousands, if not millions, of people that they have to see, but sometimes you really have to have that 20 minutes with a person to make them feel better, not that five minutes. And also to realize that there are ways to treat epilepsy without medicine. I’m sitting next to a person right now who doesn’t even take any pills, which is great. I think that’s amazing, and a lot of people can’t afford pills, so they use yoga. That’s what they use to treat epilepsy, and it seems to work for a couple of people, not for everybody. But there are a lot of different ways to treat epilepsy, not just with medicine.

Host 54:01

Thanks for joining us for another episode of Wellness, Health and Everything Else. To learn more about epilepsy and other invisible or non-apparent disabilities, visit our Invisible Disabilities Series on our website. You can find the link in the episode details on streaming apps or in the main menu on the NCHPAD website. For a full episode transcript, visit our website and find the episode in the podcasts and videos section or in the episode details on streaming apps. If you have questions about NCHPAD’s free resources, programs and partnership opportunities, email us at nchpad@uab.edu, call us at 866-866-8896 or check out our website at nchpad.org.