Episode 221: Epilepsy advocacy

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

Carolyn: On today’s episode, I’m speaking with Amee, a dedicated healthcare provider known for her expertise and compassionate care. Beyond her professional achievements, she’s a passionate mental health advocate and openly shares her personal journey living with epilepsy. She’s a powerful voice for those who feel they cannot speak up for themselves, working to raise awareness and foster understanding about mental health and invisible illnesses. Amee, welcome to the podcast.

Amee: Hi, thanks for having me.

Carolyn: I’m really excited to talk with you today and learn more about your own personal journey and all of the advocacy that you’re doing.

So I guess to start out, you know, you were diagnosed with epilepsy at a young age, at eight years old. What was it like growing up through most of your childhood with having epilepsy?

Amee: Yeah, most of my childhood, you know, it started at a younger age. We got treatment. I needed access to care and doctors and it seemed pretty simple. I was on one medication and it didn’t affect what I was able to do on a day to day basis. I, you know, went to school. It didn’t affect sports. I was part of many clubs in high school, so it didn’t really affect my lifestyle much.

And therefore it wasn’t really something that was disclosed. Not intentionally, I wouldn’t say, but it just didn’t need to be. And that was pretty much my journey and went through all of that.

Carolyn: Did you ever feel like a pressure growing up to hide it or was it more just like it didn’t really come up or wasn’t an issue that much at that time?

Amee: It was just an unspoken kind of, we didn’t talk about it. Now, I don’t know if that was cultural, you know, implications or personal, and I brought that upon myself. Maybe it was a combination of both. But in retrospect, I don’t really know why, but I also know we didn’t have to.

Carolyn: And you know, you somewhat recently started talking more publicly about your experience with epilepsy. What inspired you to actually, you know, start talking about it more publicly like that?

Amee: Yeah, I think once you get to a certain age and I have children and I think we’re in a different era now, and I think it’s important to have these conversations.

I went through a five day stay at the hospital, which if you follow me, I was very open about, and I got to the point in my life where I’m like, what, what am I hiding for? And who am I hiding for? And I can use this as a platform for knowledge, instead of having it something I’m going through alone. I can use this to, you know, get more knowledge for myself and also spread that to somebody else and be supportive to somebody else. So why am I not using this positively?

And that’s kind of where the 5 day stay came. And I was like, one, I’m not going to lie where I’m at for 5 days. I mean, where, where do you fall off the face of the earth for 5 days? And so it was kind of like, you know what? We’re just going to talk about this. We haven’t because we haven’t needed to, but why not?

Carolyn: Yeah. And you mentioned you were in the hospital recently for that five day stay. I’m wondering, has your experience of your epilepsy kind of changed over time? Like did it change from childhood into adulthood in terms of, I don’t know, more seizures or different seizures or, or how did, how did that change?

Amee: One bout where we had a little bit of challenge was when I was trying to have children and that was an intentional change in medications. And a lot of people don’t talk about women’s health and epilepsy. And that was, that was real, and it was something I was going through. I had the right provider to help me navigate that.

It was something done intentionally because a lot of the medications cause birth defects and this, you know, whatnot. So it was an intentional decision made to, you know what, we’re going to go through this phase and it could be difficult, it could be easy. It was difficult, but still not enough to where I needed to talk about it, if that makes any sense. It’s like we went through it on our own. It didn’t stop my lifestyle. I wasn’t hiding it. I wasn’t really lying about it. It was just, I was just going through some of the side effects that didn’t really interfere with my day to day life.

So that was, we went through that hump and I have two beautiful children and everything is good. I have my family. And we’ve come across kind of a bout again, and I think it could be age related and hormone related and all kinds of things at the age I’m at. And it was, this test has been something that my doctors have been telling me to get done for years. Years! I mean, years. And so this wasn’t something that was like, okay, now we have to do this. It was more me saying, why have I been avoiding this? Right? Like, I know it’s five days is a long time. And I had my own list of reasons of why I was avoiding it. I didn’t need to, you know, like, what were we going to gain out of it was my thought. And finally, when I had my second round of challenges, like this year, 2024, I was like, well, what do I have to lose?

So it was shifting the mindset of, okay, I have nothing to gain, but then also being like, well, I don’t really have anything to lose by, by doing this. So what, what am I afraid of? Like, face your fears.

And also having, having kids, if they’re going through something, I felt it was really important to model that for them, is if my children are going through something or any child is going through something, if I don’t model that of being openness and being able to talk about it, how can I expect the next generation moving forward to not do that? I was like, I’m creating a problem without realizing I’m creating a problem.

And so, you know, putting all of that together, I was like, why, why am I not talking about this? Like I’ve gone through my entire life and this year was when I was like making up excuses of why I didn’t want to go out to dinner at seven. I was just tired. And just little things, and it just kind of made me realize these are my closest friends. Why am I feeling the need to not tell them what’s going on? Because all these years I haven’t had to, right? So there’s people that have known me for 20 and 30 and, you know, so many years. And they didn’t know because there was no reason to.

And I’ve, I had to set the preface before I went in for this five day stay of like, look, this is, this is what I have. This is a little bit challenging right now. And it just was liberating. It was liberating for me on a personal level. And just to come out and embrace it, and realize like you’re not alone and there’s so many other people battling different things in different ways.

Carolyn: So it was very recently, this, this long hospital stay, it sounds like really was a major impetus for sharing with a lot of people in your personal life, it sounds like, your friends and such. So, wow. Yeah.

And if you don’t mind me asking, of the five day stay, what information were you or the doctors trying to learn from that?

Amee: Yeah. So we were treating symptoms based off of what I was saying, right? Like these are my symptoms. All the testing that I had done previously was all normal. So you’re treating a condition based on what I’m saying, but they’ve never seen any, you know, real evidence of where the problem is coming from or the source of the problem. And now I was just ready to surrender to that and be like, look, what is holding me back from doing this? This is informational.

And so what they were able to do during the test was decrease my medication levels and find out exactly where in the brain the triggers are.

Carolyn: Oh, wow. Yeah. Cause I, I think I’ve heard that for, you know, for many people, they don’t necessarily know what their triggers are for seizures.

Amee: Right. And some of that is, I’ve known my, my triggers just from life in situations through all these years, but internally, you know, from a biological perspective, where is the trigger coming from, right? And being in the field of science, why am I not doing this? So it was more to provide information to myself and my providers and see if there needed to be any changes in treatment plan with that information.

Carolyn: Oh, wow. That’s good. Yeah. I hope that that provides some answers for you because that’s yeah, that, that’s a, that’s a big step. And I’m glad that you finally had the, the, the courage to prioritize and say, I’m going to go through with this. Because as you said, it’s a big, you know, it’s a time commitment. It’s a big thing, but it also impacts the rest of your life because as you said, you have to share with people close to you, like, where am I going for five days?

Amee: Right. I came back, they were like, how was your vacation? And I was like, well, it wasn’t a vacation, but let me, let me tell you what happened.

Carolyn: Mm hmm. So then, you know, how did people react to you when you started talking about having epilepsy, whether that’s people in your sort of close personal circle or even on social media?

Amee: Yeah. There was so much positive support. And that’s what I’ve realized is, people are good. And I’ve said this over and over again is, people are out to help you. And I needed to get my family on board because I needed that extra support. I was listening to my body, so I wasn’t staying up late at night. I needed people to drive my kids around because it was just after a long day of work: why did I need to do that, if I had people there to support me? And why wasn’t I utilizing the support system that was there in front of me? And talking about it and opening up about it allowed me to do that and, and take advantage of that. Take that pressure that we all have in different ways of doing it all and being all and being everywhere.

Carolyn: You know, did you hear from anyone in your circle who maybe was concerned about you talking more openly about it or, or anything like that?

Amee: I mean, from a cultural standpoint, yes, I was, I was kind of asked, like, is this something that needs to be talked about? Like, why? Who is it going to benefit? And things like that. And I really did take a step back and, and think about it before. It’s like, you know what, that’s a valid question and why, why is it necessary?

But then my response in my head, as I’m thinking through it is, well, why not, if it can benefit somebody? So for me, it was a matter of empowerment and taking my power back to talk about my story in hopes that it can help somebody else.

Carolyn: Yeah. That’s really powerful because I don’t think people realize, and I certainly didn’t realize just how common epilepsy is. I think I heard the statistic like one in 26 people and very few people really talk about it.

Amee: Right, right. So imagine walking into a room of 100 people. There’s four people who you may or may not know. And we all look the same. We all show up the same, right? It’s that invisible illness, mental health. It all kind of floods in together as far as the purpose goes.

Carolyn: Yeah. Absolutely. So, you know, we talked about in your bio that you do advocacy around mental health and invisible or hidden illnesses or disabilities. And you have an Instagram account called behindthebindis. I’d love to learn more about what’s the significance of that name.

Amee: So that more, it comes from more from a cultural standpoint. Because that’s where I feel, I think it’s epilepsy in general, is a stigma across the board. I think that condition is across the board. But from a broader term, it’s more is why I went culturally a little bit deeper into it is because it’s not just epilepsy. It’s, it’s everything that is not “normal,” right? I’ve checked off the boxes, whatever that means, of getting an education and getting married and getting children, whatever that looks like to normalcy. Right? And then no one really talks about something that may If everything’s cut under the rug of real problems that need real attention that can, that can really be supported. And it was really just coming out culturally through and breaking those stigmas over generations.

Carolyn: Yeah, that’s really important. And then incorporating the, the bindi into that. Is there a significance around, sort of behind that?

Amee: Yeah. So the bindi for those who don’t know is the kind of the third eye or the dot that’s worn by the Indian culture. And now it’s just decorative kind of, it had more significance in the olden days as far as you only wore it if you were married and that’s what that signified. Now it’s just, we wear them when we’re dressed up, when we’re going to events and things like that. So it, that really is a representation of a cultural representation of what are we hiding behind as a culture?

Carolyn: I don’t know if this is the right phrasing, but what kind of either stigma or, you know, things that, that might be encouraging people to hide, when it comes to South Asian culture, have you experienced around epilepsy or as a South Asian woman, have you experienced?

Amee: Yeah, just in general in the South Asian culture, I think we really bogged down into what other people may think or see and perceive of us, if that is considered negative. And that can be, this is very broad, right? But any challenges that may be faced, whether it’s, you know, mental health, depression, anxiety, any of any of those things that are not blood pressure, cholesterol, diabetes is is kind of just not addressed as much, or it’s just not taken as important and prioritized. Whereas now I’ve come, you know, these are real, these are real challenges and they deserve to be given more attention to this next generation. You would hate to have someone who’s 17, 18, 19 going through someone and just being dismissed, and saying, you know, that’s not really a problem, we’re making it a problem. Or being like, you know, you don’t want to tell anyone about that because, well, what are they going to think? Well, really, the more you talk about something, the more access you have to resources. For me, it’s like, when I talked about it, I was like, given resources and directed to other healthcare professionals or other doctors and other testing. And just the open conversation was more helpful than it was not.

Carolyn: That’s great. Yeah. And I’m sure there are many, many people who are probably going through very similar struggles as you, who have epilepsy and maybe are afraid to be more open about it or, or are thinking about like, should they? Like, what are the benefits? Or is it better for me to just not talk about it? Or who do I tell? So I think those are a lot of questions that maybe people don’t have people to talk to or, or role models or people who are kind of out there and saying like, this is my experience and this is how it could potentially help. So that’s really valuable.

Amee: Yeah. And everyone’s going to go through their process. I’m not, you know, advocating the first day you you’re, you’re having something or a challenge, you go out and tell the world about it, right? Everyone is going to have a different way of processing a situation or a challenge that they’re facing. I just want to be out there to say, whether it’s one person you tell or one person you seek out to, whether it’s me, a trusted friend, a family member, don’t, don’t shy away from that, as you’re going to be judged. You’re, you won’t be judged. And if you are, that’s okay too, but you’re, you’re doing it to seek the support that you need.

Carolyn: Yeah. That’s really important. So, as you shared your story on social media, what kind of reaction have you gotten from people who are following your account?

Amee: Yeah, just a lot of support and a lot of knowledge and education that I’ve learned and resources that I’ve been able to turn to. And you realize it’s just a network full of support and care and I want to use that platform and currently able to use that platform as a tool for educating because I don’t think there’s a lot of education on the general term of epilepsy, right? It’s such a generalized term that’s thrown out there, but there are 35 different types. And it’s presented differently in every single person. And you can’t see it, right? We all walk around looking the same, doing the same, living our lives. And the more you open up about something, the more access to resources you have, really is what my biggest kind of takeaway is, has been.

Carolyn: Yeah. I, I think there are probably a lot of, you know, stereotypes in society about what epilepsy looks like. And I think we have that whole thing from, you know, the movies or media about, you know, the probably one, one particular type of epilepsy and types of seizures. But as you said, there’s, there’s so many different types. So people really need to learn that it really looks in many, many different ways and you, and you can’t tell.

Amee: Yeah. I mean, I’ve had my own closest friends who really, you know, wanted to take interest in or asking, like, tell me more. And that’s spreading the awareness and spreading the information to people. And that’s what this is all about.

Carolyn: That’s really important. Oh, that’s great. Yeah. And how long have you been advocating online talking about epilepsy?

Amee: It’s been very new because I didn’t have a reason to. I was, I was hiding. Right? I was one of the ones that I’m trying to help. I was hiding behind something and I didn’t know what I was hiding behind. But I knew when I was missing for five days, I had to, I had to face it, right? It was, it was in my face. It was a choice I made. It was the best decision for my testing and needing to get information for myself. And I wouldn’t want my children to lie about what they’re going through for five days. So what, you know, what role model am I at that point, is what it came down to. It was like, well, no, I’m not on vacation.

Carolyn: Mm-hmm.

Amee: So that, that’s what, what kind of instigated the, let me set the stage for what I’m really going through and what’s real. So when I get to that point, I can share that information. And if someone else is thinking about this or is needing to go through this process, maybe I could help someone the way I found help on social media or guidance or an idea of what I was going to to go in for, I was educated and I would be happy to be able to do that for somebody else is, is the goal.

Carolyn: It’s so cool to be talking to you at sort of the beginning of, of your social media advocacy and, and really starting to share your, your story widely. And yeah, it’s really important to, to be able to share those stories and and just encourage people because, you know, as, as you said, there are so many people who are going through similar challenges because epilepsy is much more common than we realize.

Amee: Right. Right..

Carolyn: Yeah. Well, Amee, thank you so much for talking about your, your advocacy and, and your own story on my show. How can people get in touch with you if they want to, like, learn more about your advocacy and follow you online?

Amee: Yeah. The handle, which I think will be on, on the page is @behindthebindis. You feel free to message me. And once you message me on there, we can go into a little bit deeper. I have an email. You can email me. I would love to pick up the phone. I can talk to anybody. So I’m pretty accessible as far as, you know, if you need a support system that that is my goal and that’s what I’m here for.

If you have any questions, if you know a family member going through something and you don’t quite understand it, or you want more information, then I feel like that’s a good conversation that, that I could provide for, for anybody else who’s even a family member or has someone close to them that they know.

Carolyn: Awesome, Yeah I’ll put a link to your Instagram account behindthebindis in the show notes so that people can contact you through that.

As we close out, is there anything else that you’d like our listeners to know or anything that they can help or support you with?

Amee: Once you start to talk about it, you can receive help and access to where you need to be, and the support. I think most importantly is, no one knows you need support if they don’t know what you’re going through. And there’s no reason anyone should go through challenges alone when their network and their support system is right in front of them. They just don’t know. So that was the biggest kind of takeaway that I feel like, and it’s very liberating. And you turn that into an educational tool for somebody else. And that, that, that is my goal.

Carolyn: That’s wonderful. Yeah. I’m so glad that this journey has, has been so liberating for you and is clearly going to be helping so many people hearing your story. So that’s wonderful. Thanks again, Amee. It was great talking with you today.

Amee: Likewise. Have a good one. Thank you.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend, give it a shout out on your social media, or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at Beyond6seconds.net. Until next time.