Epilepsy, Dating, and Men's Mental Health with an Invisible Disability

Today we are joined by Austin, a brand ambassador for Young Adults with Epilepsy, to talk about the unique struggles around being a man with epilepsy.

Austin (00:00.126)

like have I ever encountered someone that specifically has a stigma towards men with epilepsy and the answer is no. I think the real answer is have I encountered a man with epilepsy that's been open about it and the other answer is no.

Jordan (00:19.33)

Welcome to Young Adult with Epilepsy Central Coast podcast Carpe Season, a podcast hosted by a young adult with epilepsy for young adults with epilepsy because sometimes you just need to hear from someone who gets it. Today's guest on the podcast is Austin, Wendy's son, and one of our brand ambassadors for Yahweh. Welcome to the podcast, Austin.

Thank you. How are you doing today?

Good, how are you?

Doing pretty good. I'm doing well.

So, I just wanted to start by asking, what has been your epilepsy journey?

Austin (00:55.278)

It's an interesting question because I think for a large portion of my adult life at least, it's something that I've not even really considered in terms of stigma, in terms of lifestyle, and thankfully, as an adult now who is on a medication that verifiably works, it's something that I don't necessarily have to be concerned with.

assuming that I get enough sleep, that I'm consistent with the medication. But I will say as a kid for sure, it definitely made quite an impact. I remember, I think I had my first seizure when I was maybe two or three years old. Doctors were telling my parents that I would inevitably grow out of it, that never happened. I think one of the first moments that

Definitely made me feel different was when I was in fourth grade, I believe we were in the computer room for elementary school and Remember I was typing I was doing well and the next thing I remember I wake up looking out of the backside of an ambulance and It turns out that what happened was During this, know computer session

I ended up having a seizure falling onto someone falling onto the ground. that was, I would say a turning point for me in terms of not so much, I mean, as a kid, you don't really care about having seizures. It's not really a concern. The concern is, being different and being seen as different to those around you. And, you know, after that, I think I got to a point where

As I got older, I recognized that it's something that is not entirely within my control. And so that's something that I really shouldn't be worrying about. But I think a lot of people with epilepsy can relate to this. I myself always worried less than my parents, specifically my mom. No matter what happened, no matter how safe I was, I could literally be locked up with an IV medication drip. My mom would find a reason to worry, to be concerned about the possibility.

Austin (03:17.74)

of her son having a seizure and something happening. So I would say for myself, all things considered, my epilepsy journey has been relatively good. And I'm actually quite thankful considering how large the spectrum is for epilepsy. think a lot of people don't recognize that it's not just having a seizure. There's people that have seizures monthly, weekly, potentially even daily. And so considering that I don't have to deal with that and that I'm able to find a medication that works for me, I'm pretty grateful.

All things considered.

Yeah, I feel that. was also told, because I had my first seizure when I was eight months old, I was also told I would grow out of my epilepsy. Never happened. I feel like maybe that's, I don't know anyone that was told that that actually happened too. So maybe that's just a lie they're telling us. Do you feel like being, since it is men's health month, do you feel like there's any certain stigmas surrounding being a man with epilepsy or even just men's mental health in general?

think men's mental health is the greater scope, the greater picture of things. was actually thinking about this, like, have I ever encountered someone that specifically has a stigma towards men with epilepsy? And the answer is no. I think the real answer is have I encountered a man with epilepsy that's been open about it? And the other answer is no. So I don't think there's a stigma against men with epilepsy as a whole, at least not that I know of. I can only speak for myself.

And so I'll give my perspective as to maybe why there's a lack of representation for men. So men are actually more likely to be diagnosed with epilepsy. I think it's like 55 % of men have it, 45 % of women. So it's not that there's an under representation of men actually afflicted with it. It's more so that men who are dealing with it are less likely to seek help, are less likely to speak out.

Austin (05:17.41)

find other people that are dealing with similar circumstances. And so for me at least, I think this is less of a stigma and more of a grand idea. So when I'm, for example, going out with people, I'm not only, let's say we're going out at night. I'm not only looking to keep myself safe, but I'm looking to keep people around me safe. I'm a big guy, I'm 6'2". If I'm on a date with someone, I want to make sure that

You know, if we're going anywhere late at night that she's safe or the group that I'm with is safe. And I think a concern for people, men that have this idea of wanting to, you know, protect people around that they care about is that if they have a seizure instead flips the script entirely, uh, seemingly out of nowhere. remember one time I was even on a date and, uh, this is the first time that, you know, she had come over and

I had a seizure in front of her and she ended up.

telling me later on that she initially thought I was joking because I would mess with her. So for the first 30 seconds or so, she was saying, Austin, okay, you're funny, stop. And then I apparently didn't. then she called the ambulance. And funny enough, I ended up having to be the one to calm her and the paramedics down when I came out of it. I'm like, guys, everything's okay. Everything's good.

So in terms of stigma towards men specifically, think there's actually just such a lack of representation that there's no stigma to begin with. I I don't think there is just enough of a representation for there to be a stigma. So I would not say that for epilepsy regarding men specifically as a stigma, I think a more broader holistic view would just be men in mental health as a whole.

Austin (07:16.183)

is what I would say.

Yeah, you're the first man that's at least told me that the pedopelopsie that I've met in my 23 years of living. So I do feel like it is a super underrepresented group. And I feel like it's an underrepresented group when we talk about disability in general. feel like often the advocates you see are women. And just in general, that's kind of

when you see maybe like the epilepsy foundation projects or something like that of people telling their stories and normally is mostly women. And would you attribute that to maybe men not being as open about their mental health or what do you think that lack of representation is from?

I think a lot of guys

Uh, not to stereotype entirely, cause I actually grew up in a very welcoming and productive household in terms of speaking on, you know, any issues that I was dealing with. But, and I think that's a big reason why I'm so open about it. And that it's always, at least when I was younger, it confused me. like, why aren't guys like, who cares? Like, just talk about it. But I think there is.

Austin (08:26.892)

You know, I'm a very specific subset of an area that's very accepting, at least that I grew up in the Bay Area of California. That's like literally known for being accepting of anything. So growing up with it, I never felt that I had to hide it or that I had to not talk about it. If anything, the only person that I didn't even want to address it with was myself, not as a form of denying its legitimacy, because I didn't even want to consider it. It was happening so infrequently.

that I just wanted to pretend that it didn't exist. I didn't even have to, you know, want to allow it to occupy my brain space when all these other things were happening that that happened when you grow up. So I would say that in general, men are already skeptical in terms of wanting to find mental health support. And I think we can really get into like the macro scale of it. I think there's a stigma

In the grand scale of things that if a man goes to get help for his emotional state that he's weak or that he's admitting that he's weak and men should be strong. like there's this whole archetype around it. I would say that.

Austin (09:44.472)

I think especially rewarding something that is not inherently emotional, that it's difficult to find because I know for the workshops, know, we get a largely predominant female audience that shows up to our workshops. But I wouldn't be surprised if these were not.

their first times that they've at least been exposed to these workshops to begin with. Even one of the girls that joined was talking about how she was trying so hard to get her boyfriend with epilepsy, you know, to join a workshop and he was so resistant to it. And so I think it's, I think it's just a greater picture type of situation. I don't think there is, I don't know. I really don't. grew up in a super,

accepting area. So it's hard for me to wrap my mind around that. But it's, it's something that I'm going to be hearing more so in the, the next week, speaking with, with more men regarding it.

Obviously you grew up in a very accepting area, but going through maybe the healthcare system, did you ever feel like your concerns about how you were feeling about your epilepsy weren't taken seriously because of that, specifically mental health or your emotions surrounding what was happening?

That's a good question. Oddly enough, no. I was diagnosed with ADHD at a pretty early age. And when you look at epilepsy and other forms of...

Austin (11:26.51)

don't know the exact specifics. I'm not going to, I'm not going to, you know, go into details, but I believe there is a correlation between epilepsy and having some other things going on mentally. Looking back, I don't think anyone had ever made the correlation between epilepsy and ADHD or any of these relations to begin with, which is very strange looking back because there's a massive correlation.

I think in terms of doctors hearing me out, something that Abby and I both spoke on at the most recent conference that we went to when speaking with some neurologists was more so the black and white approach of these doctors towards kids with epilepsy as opposed to how they're, how they're actually feeling. And I think a lot of doctors, it's very easy for them to see the world through a black and white.

lens and look at it purely through what is medically going to keep them the safest. And so I think I did not feel entirely heard when it came to medication and its side effects. I remember going through a bunch of medications. A lot of them made me extremely lethargic, have memory loss, essentially being a state of living that I didn't see worth living.

And a lot of doctors could not fathom the idea that someone would choose to not take medication that made them feel so bad that they would rather risk having a seizure than deal with the side effects that come with those same medications. And so in terms of...

Did I not feel heard? I would say that I felt heard, but I think looking back and even now, what it felt like was that every doctor prioritized only a clinical approach as opposed to a holistic one, which looks at both quality of life and safety, which I think should be combined. And a really quick tangent.

Austin (13:42.574)

The one time that I met a doctor and it's insane that this was a surprise to me or that it was an eye-opener. I was getting a brain scan done in Arizona and they had all these wires hooked up to me to try to induce a seizure. was staying up nights on end to try to induce some activity in my brain that would be similar to a seizure to then

IV drip me a certain medication to see if it would be effective. Thankfully it was. But I remember the doctor came in at one point. It was just me and him. And he said something to me. He said,

You should not live your life only on medication and not experience it. need to experience life with safety in mind, of course. But something specifically that he said that really stuck with me is that there's really, for all ailments that affect us that we don't have complete control over, there's really only so much that you can do in life. And this goes out for the people that love them as well.

that worry about their, maybe their kids or their friends or their loved ones well being that there's so much that you can do, but you really want to support them living their best life. Whether that's on medication or whether it's not, it's important to recognize that that person's quality of life is also very important. And I think it makes a lot of people feel more comfortable when someone is on a ton of medication.

and potentially unhappy because there's a percentage chance that they're going to be more safe as opposed to someone living a better quality of life potentially on a different medication. There's just so many subtopics when it comes to these types of issues, especially with how it feels you're throwing, what is it, at a wall and seeing what sticks?

Austin (15:53.262)

That's what it feels like with with epilepsy medication. There's actually a very large similarity between epilepsy and antidepressants because antidepressants as well. You have to take them for, I don't know, up to six months to see if they're effective. And even then you don't know a lot of antidepressants. The best effect is none because a vast majority of them will cause side effects. So yeah, it's

We're advancing so much medically, I think for a lot of, I'm sure a lot of people can relate to this, not even just for epilepsy, but depression, anxiety, we're advancing so quickly. have so many options, but we don't have an definitive one. There's, there's too many options. It feels like a lot of the time. So yeah, that's, that's what I would say.

Yeah, I was for a long time taking Keppra and I still am. But I remember I was sleeping like 12 hours a night and I would still be tired. And that was happening to me for years and years. And my neurologist kind of dismissed it because he was like, well, you need the medication. It's important, obviously. And I eventually switched neurologists. And she was like, No, this is not normal at all. Like this shouldn't be happening to you. And it

felt really nice to finally have someone that understood that my quality of life was also important in terms of I'm not living a normal life if I'm sleeping 12 to 16 hours a night and I'm not spending time with people and I can't stay awake in class. And so I felt like that was such a big change and is something that's so important for neurologists and optologists to hear is just that there's also that component of quality of life because

Controlling your seizures only does so much for your health as a whole. Going off script a little, I was wondering if you've ever had feelings about or really thought about mental health in relation to the people you affect around you, like maybe your mom, because I know a big concern for me has always been how my epilepsy affects the mental health of the people around me rather than my own mental health. But I was wondering if you had any thoughts on that.

Austin (18:09.29)

It's a really interesting topic because epilepsy is one of the seizures specifically, one of the few events that occur that can quite literally traumatize the people around you more so than yourself. When someone is watching someone unconscious without any light in their eyes uncontrollably

convulse and shake on the ground, potentially not breathing. That's scary. That's terrifying. Especially when it's a loved one, let alone if they even know what is happening. I mean, there's a large chance that someone sees someone having a seizure and they have no idea what's going on. And so

Your question was, like, if I consider how people around me, like, feel.

Yeah, do you feel like you ever have worries or maybe taking consideration to some extent too much the mental health of the people around you in relation to your epilepsy?

Yeah, I mean, think this is where boundaries come into play because on one hand, do I ever want my mom to see me have a seizure? No. Do I ever want a loved one to see me have a seizure? No. Of course not. That's extremely traumatic for them. They're potentially, you know, dealing with a lot. However, when it comes to these types of things that are putting your life at risk, quite literally,

Austin (19:46.742)

It needs to be prioritized for yourself. Do I care about others, especially loved ones, seem to have a seizure? Of course I do. I don't want my loved ones to see me in pain or, you know, doing something that that's going to, upset them. But I think something else to consider is that I think when dealing with, with epilepsy, it's very easy for loved ones.

I think one of two things is very easy. I think one, it can be very, it can feel overbearing. And this is a very privileged response because it, the implication is that you have someone in your life that cares so much that they want to ensure that you're safe. So I'm saying this from a place of gratefulness. I really am. I'm grateful that I have people in my life that are genuinely worried for me that

something will not happen. And I genuinely do appreciate that. But from the perspective of someone dealing with it, that feeling can feel overbearing. It can feel that you have a lack of autonomy. Even as a fully grown adult, it can feel like in day-to-day life that you're on a leash to some extent. That I can't do this because then that might worry this person. So I think when it comes to worrying other people,

something I remind myself is the best thing that I can do for these people that worry about me is focus on taking care of myself. And by remaining in that line of focus, there is no place for worry. I'm doing my part to the best of my ability. And if something happens that's out of my control, then that's what it is, is out of my control. I think that actually goes for a lot of things in life that people worry about that

give them anxiety. think there's so much focus place on the what ifs as opposed to

Austin (21:54.286)

There's something called the internal and external locus of control. think a lot of anxiety stems from focusing on things that you can't control and a large part of.

I guess a lack thereof anxiety, so we're going to what you can't control. So what can I control? can have, I can have good sleep. I can have, I can do my medication. I can be healthy. I can drink water, all these things. There's no room for anything else. If something happens, you know, with all things considered, then it is what it is. So I think, I think my mentality now and something that I've been trying to impart onto those who do care about me is that, look, I'm doing my part, but I need you to recognize that

I appreciate how much that you care about me, but if something happens, it happens. People walk outside, get hit by lightning. The chance, the what if, there's always a chance for literally anything. the energy that it takes from you to replay the what ifs in your own mind, I believe it's just not resourceful. And so I would really...

want anyone who is worried about me having, you know, a seizure to just recognize that I'm doing what's in my control. I want them to to focus on being positive and caring about themselves first and foremost. So I think that's what I would say.

Yeah, I agree. I feel like I went through even just myself a very long period of the what ifs. My uncle had epilepsy and unfortunately, he passed away from having a seizure. After that for quite a few years, this was a while ago now, I was in high school. But for quite a few years, it really affected me and my family of like, what if this happens to you also? I think finally, really recently, I've realized that that's

Jordan (23:49.708)

obviously not something I have control over and that it's better for my mental health and for the mental health of the people that do care about me so much to recognize that it's completely out of our control and that we are doing everything in our control. Can you talk about the men's workshop that you're planning this month and kind of what your hopes are for talking about men's mental health?

Sure, mean, when it comes to epilepsy, obviously, as I brought up, epilepsy actually affects on average more men than women, which is not a flex, by the way. It just does. There's just more men with it. But the representation does not reflect that. The vast majority of postings that I've seen, and in fairness, this could simply be based on different advertising funnels that we've gone through and different

postings, there's tons of variables. But I would strongly bet that if we were to scan through everything and see all postings and we went through every single person's conversational history and we looked at the amount of women that are open to discussing this and looking for help and conversation as opposed to men, I would strongly.

I would be very confident that it is predominantly women that are open to speaking about their dealing with epilepsy. And so my hope for this workshop specifically, for one, it's on June 15th, Father's Day is June 16th. So for one, I think it's very good that, like very important Father's Day gift if you want to give one as a man who is dealing with epilepsy is,

to let them know that you're going to workshop for your mental and physical health, that you are going to specifically to have an open and lack of judgment forum to discuss and learn from others what tips that you've used in your own life in either dealing with epilepsy, going through the proper steps of getting prescribed the right medication, and simply having an open space to speak with others on their experience with it.

Austin (26:12.174)

I want to offer that space specifically for these men to openly talk about it without fear of judgment. Because I think that's a big concern when it comes to talking about mental health, let alone epilepsy with a lot of men. so, that's a gulam on.

I love that. Do you have any advice you'd specifically give to men listening to this podcast on mental health, whether that be in relation to epilepsy or just anyone dealing with chronic illness or conditions in general?

Austin (26:51.554)

Just own yourself, like, take full accountability. And I don't mean that in like a literal sense. What I mean is like, if you're feeling sad, if you're feeling angry, if you're feeling, you know, whatever type of way, just simply, I believe the strongest thing to do as a person is to acknowledge how you're feeling and be vulnerable about it. I believe that is the strongest thing that you can do. If you are openly hurt, if you are openly angry, if you're openly anything,

and you are able to open yourself up to a potentially group of people and discuss that. That is what I believe is where true strength comes from. It is the ability to be unapologetically yourself, unapologetically emotional and allow that to be seen by people around you. think that is where true strength stems from. I don't think it's anything else. So my advice to men

dealing with epilepsy and potentially mental health on a grander scale.

is to simply own it. think it just makes you a stronger person by acknowledging it. then from that point, you can actually then begin to work on those things because the first step is just being aware of it to begin with. So yeah, that would be my advice regarding just men's mental health on a grand scheme.

Do you think we've done quite a few workshops at Yahweh on self-care as a whole? Do you feel like maybe an outcome that you're hoping for or just in general that because of the stereotypes around men and being providers and that in general that there's less of that openness, whether that be conscious or unconscious to self-care?

Austin (28:46.094)

100%. I think, well, I don't want to say self-care because there's different forms of self-care. So I think self-care in the mental health sense, 100%. I think consciously and unconsciously men are taught that their form of self-care is through achievement, achievement that can be physically seen.

whether it be through work, whether it be through fitness, whether it be through activity, hobbies. But I don't think self care specifically for mental health is.

seen as the same type of self-care. I don't think it's seen the same, at least from my perspective. So what I would say is that, no, think both men and women, obviously, should strive for self-care, but I think it's just viewed potentially through different lens. So yeah, it's just something that I think needs to be more.

uncovered and discovered and by the way, like I think another fear by the way, at least one that I've had when it comes to these, you know, workshops or whatever is, you know, you think of these, these workshops where people are opening up and you just think everyone's crying and everyone's just like, like screaming and like, like, no, that's not what it is. That's not the purpose. The purpose is literally just to

have an open discussion with other people that are potentially dealing with something similar as yourself to just get some insight and potentially learn from what they've dealt with. You you're talking to a bunch of people that are living life to the point that they're even able to allow themselves the luxury on a Saturday to have a discussion with other like-minded people. These people, they work in the corporate world, they're traveling, you know, they're doing all types of things. These are not, you know, crazy people. These are

Austin (30:47.95)

These are normal, successful people that are doing well in life that simply want an avenue to discuss with other people what they're dealing with. If anything, it's a symptom of success to even want to do this in the first place, because it just shows that you're trying to acknowledge all areas of life. If you're doing well in corporate, like your work, and you're doing well in, let's say, fitness, you're doing well in all these areas, wouldn't you also want to do well mentally? It makes the most sense, personally, because mentally that's

really what's going to be driving you in all these directions to begin with is that motivation behind it. And so I think any way to try to improve upon that is only going to be beneficial. So, yeah.

Yeah, I was wondering kind of looking forward, if there's anything else you're hoping to do with Yahweh, this can be related to men's mental health or not. What does the future look like for you right now?

So the future for me currently, I'm gonna be going to the Philippines in a few weeks. I'll be staying there for three months. My stepbrother lives there, so he's gonna be helping me out with any questions that I have, but something that does motivate me. Going forward with Yahweh as a whole would be to bring it international awareness, because the sigmas are obviously different depending on the location that you're in. So for example,

What are the stigmas regarding epilepsy in the US? Generally speaking, flashing lights, shake on the floor, you know, that's, that's the perception. You go to other countries that are potentially less developed. People have a seizure. They believe that you're being possessed. They believe that, you know, something's inherently wrong with you, that, that you're not, you know, my point is that the stigma is ironically in the US are actually also privileged because

Austin (32:43.256)

The stigma around it is just like a meme. It's like, I'll show you flashing lights and then you have seizure. It's like a joke, which is obviously not right either. But it's way better than someone seeing you have a seizure and thinking that you're literally possessed by the devil and that you're going like that. You're just, you know, not doing well. So I think bringing it international awareness to begin with would be a great first step, not only for men with epilepsy, but also for mental health.

And for one, course, obviously. So I think that's probably the next step. And then just go from there and see what kinds of attention we attract and just capitalize on that.

Yeah, I feel like, and this is my parting compliment to you, I feel like you really stand for some sense of hope in a way, or definitely a role model I've noticed within Yahweh. I think the visibility in general, you've provided a lot of visibility for men's mental health, especially recently. And I think that's so valuable. And you're obviously someone that's successful, and you're traveling, and you're doing all these things that

I feel like are stigmatized as something people with epilepsy don't do. I applaud you for being able to be that role model for other people because I think you're providing currently a lot of the visibility that you've never seen. And I think that taking that first step is so important.

Sure. I think also, well, thank you for that. think also just for me growing up, it was never even an issue. Like it was just something that happened. Like, but I want to ensure that people that are dealing with it, they feel that they can't speak about it. And by the way, there's other reasons that people don't speak about it. There's potentially work related reasons. There's potential, like, for example, we had someone who is talking about how they don't want to, you know, talk about it because they're

Austin (34:37.72)

their work might find out and lay them off. There's other concerns that are separate from just feeling judged or not being able to relate. There's real valid concerns in terms of your career potentially being at risk if talking about it. there's many reasons that people don't talk about it. It's not just people that are like in their room scared to even acknowledge it. No, there's real world valid concerns about potential employers finding out.

with digital opportunities. Do you want to put this on your, as your checkbox to get potential aid? Is it something that you want to do? Would it actually risk something? So there's a lot of things to talk about regarding it. And I would also add that,

You know, it's just something that.

It's just, it's behind in terms of medical knowledge. feel that with a lot of people, I think for a third of people with epilepsy, no medications are found to even be effective. And so for those people as well, I want to offer a voice that, you know, I've come to terms with that and want to discuss it because that's insane. You know, how many medications you have to offer and a third of them are still

not benefiting from medications. So yeah, I want to offer a voice for those people as well.

Jordan (36:08.098)

Thank you for listening to today's episode with Austin. As a reminder, you can visit youngadultswithepilepsy.org to view our monthly workshops and to join our Wednesday peer support groups at 5.30 p.m. Pacific Standard Time.