S4E4: Microsleeps, Hallucinations & Homework: Wendy’s Daily Fight

In this powerful and eye-opening conversation, 18-year-old Wendy shares what life is really like growing up with narcolepsy type 1 with cataplexy. Diagnosed at just 13 years old, Wendy opens up about sleep attacks in class, cataplexy triggered by laughter, hallucinations vivid enough to call the police, and the emotional toll of being a teenager who never gets to “just be a teenager.”

Through humor, honesty, and incredible resilience, Wendy talks about friendships, family, school accommodations, dating with narcolepsy, and what it means to walk into adulthood with a chronic sleep disorder — completely unmedicated.

Her story will break your heart, make you laugh, and leave you inspired.

In This Episode, We Discuss:

• Early symptoms and Wendy’s shockingly fast drop into REM (1.5 minutes!)
• Managing 10+ cataplexy episodes a day
• Being a teen with a hidden disability that classmates don’t understand
• The fear and reality of hallucinations
• Microsleeps, automatic behavior & writing dreams in school notes
• Why Wendy chose to stay unmedicated
• Accommodations in school and the struggle to be believed
• Navigating friendship, dating & self-worth
• Her dream of creating films that portray chronic illness accurately
• Advice for teens with narcolepsy who feel alone

New Episode Out Now 

Link: https://www.napsforlife.com/podcast/episode/7e049ba0/s4e4-microsleeps-hallucinations-and-homework-wendys-daily-fight 

Wendy is a passionate teen advocate and the creator of the narcolepsy awareness page @dazedanddozing, where she designs educational infographics and shares her journey. She is beginning her college path in Film Production and hopes to create media that reflects real, misunderstood conditions like narcolepsy.

Follow Wendy:

Instagram: @dazedanddozing

Support the Podcast

Join our Patreon for bonus episodes, behind-the-scenes content, Discord access, and exclusive merch.
 Visit: napsforlife.com

Chapters

• 0:12 Navigating Life With Teenage Narcolepsy
• 18:47 Managing Narcolepsy Symptoms in High School
• 26:05 Navigating Social Life With Narcolepsy
• 36:15 Narcolepsy, Relationships, and Mental Health
• 46:28 Embracing Narcolepsy's Unique Challenges
• 57:10 Narcolepsy Navigators Community Support

Transcript

00:12 - Liz (Host)
Hello, welcome. You're listening to season four of Narcolepsy. 

00:16
Navigators brought to you by Naps for Life CIC. Narcolepsy Navigators is a podcast for raising awareness of these fascinating illnesses through a deep dive into the lives and individuals living with narcolepsy, idiopathic hypersomnia and Klein-Levin syndrome. I'm Keri Boger, the founder of Naps for Life CIC, and welcome to our stories. Narcolepsy Navigators is excited to announce our new patreon and merch store. You can choose to support us monthly via patreon and receive bonus content from our advocacy and medical series, as well as a shout out on the show. Subscribing to our patreon will allow you to have access to narcolepsy navigators discord server where you can chat with other navigators, find support and ask questions to be featured in future bonus episodes. Higher tier supporters can also receive patreon merch or, if a monthly subscription is not in your budget, you can check out even more our website, wwwnaps4lifecom. 

01:26 - Liz (Host)
Welcome to Narcolepsy Navigators everyone. I'm Liz, your host for today, and I have narcolepsy type 1, so that's narcolepsy with cataplexy. And unfortunately Kerly can't join us today as she is in Kenya and there is not very good internet where she's staying. But we are joined by our guest today, wendy. 

01:50 - Wendy (Guest)
Hello, I'm Wendy, I'm 18. I have narcolepsy type 1 with cataplexy. I was diagnosed at 13. I started showing symptoms around 11. At 13,. 

02:05 - Liz (Host)
I started showing symptoms around 11. Wow, super young. So our topic today is life with narcolepsy as a teenager. 

02:15 - Wendy (Guest)
Yes, I was told the average it takes for someone to get diagnosed after onset of symptoms is around eight years for narcolepsy. So most people aren't diagnosed until a lot later in life. It usually takes a lot longer to get diagnosed. I feel like I was diagnosed rather quickly because I feel my case is a lot more severe than the average case just because of how many cataplexy episodes I have a day. I have anywhere from 10 or more a day, mostly when I'm laughing. Everyone I know kind of knows when they make me laugh it's probably going to make me fall. So yeah, we've learned to kind of work around it, and is that? 

03:08 - Liz (Host)
a full body cataplexy attack like how long are you down for? Is it something that you can kind of safely get yourself to the ground, or is it more immediate it? 

03:18 - Wendy (Guest)
depends on kind of how hard I'm laughing, but most of the time I have enough time to kind of like slowly work my way to the ground. Um, my mom calls what I do kind of like melting, where I'll kind of like slowly fold my body down to the floor, um, um, so that I can safely sit before it happens. But most of the time I'm able to sit before it happens and how do you manage that? 

03:54 - Liz (Host)
the fact that you you mainly get cataplexy when you laugh, does that mean that you try and limit the amount you love? We try and suppress that emotion in some way um, not particularly. 

04:08 - Wendy (Guest)
I just feel like if I inform most of the people that I hang out with um a lot of the time, that it's going to happen, all of my friends kind of know what happens, so a lot of them know to kind of let me lean on their shoulder or something If we are in a situation where they're making me laugh or I'll be sitting down hasn't really caused me to suppress any of the like wanting to laugh or anything like that. Sometimes it can be worse than other times, so it kind of just depends on the scenario. 

04:45 - Liz (Host)
And how does it actually make you feel the fact that you have a cataplexy attack very often when you laugh? 

04:52 - Wendy (Guest)
It can be really hard to deal with in social situations and stuff might not invite me to things or might kind of not want me there, because they have to deal with that sort of thing in a social setting which can be a bit difficult. It's kind of hard to balance having narcolepsy and still having a social life, because teenagers are judgy people yeah, I can imagine. 

05:26 - Liz (Host)
yeah, that must be really hard, and have you experienced negative feedback from people when you've had cataplexy or attack or what makes you think that you're not invited to things because of it? 

05:42 - Wendy (Guest)
I have had a few negative experiences with people where they'll think that because I don't show up to something or because I sleep through something, that I have control over the fact that I sleep through that, and a lot of people are like, oh well, do you find me boring? Or oh well, why are you doing this? You know, and sometimes that can be a bit difficult because I don't have control over that and it feels like sometimes people don't fully understand what narcolepsy is and why I do the things I do. 

06:25 - Liz (Host)
That must be very tricky as a teenager because I feel like even as an adult people don't understand narcolepsy a lot of the time, even with their like fully formed over 25 year old brain kind of thing. So as a teenager your brain's like still developing a lot and it's a time when you all really want to fit in with each other, right. So it must be hard to like, be different and also have to explain to people what that difference is. 

06:56 - Wendy (Guest)
Absolutely. I kind of my friend group. I am in theatre so we do plays and productions and stuff like that, which gives us another way to connect. But also theater can be a lot harder with having narcolepsy. It's kind of a running joke that I sleep backstage during all of our productions. I think there was one production where I actually slept like four or five times in between my queues. I almost ended up missing a queue. But it's nice to have something that we can connect over. That kind of allows me to still be included in hangouts and things like that and to meet new people. But being a teenager with narcolepsy is definitely very difficult. 

07:54 - Liz (Host)
What do your symptoms look like day to day? So you have the cataplexy. What's your kind of daytime sleepiness or other symptoms like so? 

08:04 - Wendy (Guest)
I have daytime sleepiness, which I would say I have like four to five sleep attacks per day where I will sleep probably like 30, 30 minutes to an hour on average. Sometimes they can be longer Sometimes. Sometimes I'll sleep up to like four hours for a nap. I try not to. I try to keep it between 30 minutes to an hour because it's not the greatest to have a nap that long. But I have cataplexy, so I'll have up to like over 10 cataplexy attacks per day. 

08:43
I have something called microsleeps, where sometimes it kind of just looks like I'm staring off into space for like a couple of seconds, but I'll actually be completely unconscious, and it's happened a few times during conversations with people where I'll just like not remember a single thing they said, but I'll still be talking to them. Kind of the automatic behaviors. I've had hallucinations that are mainly auditory ones. It's only happened a couple of times. And then I've had definitely the automatic behaviors, something that happens quite often, where I'll be typing and then I'll fall asleep and I'll keep typing, I think that's about it. 

09:30 - Liz (Host)
I remember that was one of the main things that led to me getting diagnosed, because I took along my notes from school and was like this is not normal to be like falling asleep and I was literally writing out my dreams. 

09:46 - Wendy (Guest)
It was so weird yeah, I've definitely noticed that. Um, a lot of the things I do are related to when I'm dreaming. I was told by several of my friends that I talk in my sleep and it's not just like the normal, like oh, a little babble here, a little babble there, like I will have full conversations. Several of my friends that I talk in my sleep and it's not just like the normal, like oh, a little babble here, a little babble there, like I will have full conversations in my sleep, and it's always about something regarding my dreams. So it'll make no sense, but I'll still be talking and answering questions, like I can hear the person, but only subconsciously. So it's really weird. 

10:25
I started noticing when I was 11, I think I was playing a video game with one of my friends and that was kind of the first time I noticed anything was weird. So we were playing a game and then all of a sudden I just woke up in my bed and I don't remember walking there. I don't remember anything, um, cause originally I was sitting at my desk at my computer, and so I walked back over to my computer and my phone is sitting on the ground from when I had her on call. Um, my laptop was still open and in the chat it chat, it was her saying hey, where'd you go? Hey, why are you ignoring me? Hey, like what's happening, you know? 

11:12
And so I asked my parents. I'm like hey, did I fall asleep? Did like one of you carry me to my bed or something? And they're like no, what are you talking about? So that was the first time I kind of noticed something was off, but I didn't get diagnosed until 13 because we thought it was just oh, you know, you're a teenager, lots of changes, you know. So you're gonna be sleepier and everything. Yeah, so you're like start taking vitamins. 

11:39
You know kind of do these things and you know, maybe it'll help. It wasn't until I was like 13. I started falling asleep in everywhere I went uh, car rides I would lean against the window just on the way to school short, like 15 minute car rides I would fall asleep against the window. I would fall asleep in dentist's office. I would fall asleep, um, in plates of food. I've fallen asleep in like a full-on bowl of soup. 

12:12
The thing that finally got me diagnosed was it was the middle of the night and I heard someone scream like there was someone in our house. I thought it was my mom screaming and I texted the police that there was someone in our house. And, yeah, I texted the police that there was someone in our house. And so the police showed up at our door and my mom walks out and she was like, why are the police here? And I'm'm like what do you mean? You're okay? Like what's happening? Um, so it was a very scary experience and that was finally when my mom was like yeah, there's something wrong wow, that is incredible. 

12:57 - Liz (Host)
I don't think I've heard a story like that before. Like it yeah, obviously a lot of us get hallucinations at night auditory or visual but the fact that it felt so real that you actually called the police or text the police why it was. 

13:14 - Wendy (Guest)
It was definitely a very scary experience. Um, I don't have auditory hallucinations very often, but when I do, they're always like very vivid, so it always feels like real. So like sometimes I'll hear people like calling my name and I'll be like hey, like did someone call my name? And they're like no, absolutely no one was saying your name. 

13:38 - Liz (Host)
So it's a very scary experience to think about, like hearing something that's not actually there yeah, and the thing is, even though you when you heard the scream it wasn't real, it still felt real. So you would still have a kind of like traumatic response to hearing someone in your house scream and having to message the police to come and check out what's going on and feeling all that fear yeah, I was too scared to actually call them, so I I texted them um. 

14:14 - Wendy (Guest)
Most people when I say that they're like you can text the police, I'm like, yes, you can. Um, but I texted them and I was like there's someone in my house and as soon as it was over, as soon as it happened and the police were gone, my mom was like you realize, we have dogs, right, the dogs would be barking. 

14:43 - Liz (Host)
I was like I did not think about that in the moment because my first thing was, oh my gosh, someone's in the house, yeah, and also at the time you were literally like 11, 12, 13, right, yeah, I was 11, so you're not going to be thinking about it with like a grown-up brain, you're just going to be like I heard a scream, something is wrong. Get people here that can help yeah. 

15:02 - Wendy (Guest)
So after that my mom mom got me referred to a neurologist and we scheduled a sleep study. We had to drive four hours to Phoenix in order to get a sleep study done because it was the only pediatric neurologist nearby. So we got my sleep study done and it was. It was a really pretty hospital, but it was like really scary in the moment, cause I was just. I was just like 13, and to be 13 and to be in a hospital for something that you have no clue what's going on is really scary. 

15:52
We ended up getting the results back because in the moment I was like I have to take five naps during the day and then sleep through a full night, like that's, that's impossible, I'm not going to be able to do that. Nobody can do that, you know. Um, I slept through every single one of the naps and still slept through the full night. I only woke up probably twice during the night. But we got our results back and she said it takes the average person 60 to 90 minutes to go into REM sleep. It took me a minute and a half, wow, yeah. So it was pretty crazy to hear that and think like I'm, I'm different, like that's not normal, you know. 

16:43 - Liz (Host)
Yeah, how did you actually feel when you got the diagnosis of narcolepsy? 

16:48 - Wendy (Guest)
because obviously you were so young at the time it was really overwhelming, because to be a teenager and think like to be so young and to hear, hey, this is something you're going to have for the rest of your life, there's no cure, there are medications you can take to ease the symptoms, but it's never going to go away, that's terrifying to someone so young, so it was a little overwhelming at the time. I've kind of come to terms with it now that I've had it for a while, but sometimes it can still be really scary to think about. 

17:38 - Liz (Host)
Yeah, definitely, and I think something that comes up quite a lot when we talk to people who have narcolepsy is that actually one minute you can kind of be accepting of it, and then the next minute something happens and you're like this is so hard. And then you're kind of always in that cycle of, yeah, one minute it's okay, the next minute you're like why did this happen to me, like this is really difficult but yeah, I don't think most people realize that you can develop a disability at almost any time and no one's really going to see that for themselves. 

18:17 - Wendy (Guest)
Like, that's not something that you're like planning for. So one minute you have plans for this big future and then the next minute you have to work around everything you do with a chronic illness and it's kind of difficult yeah, definitely. 

18:42 - Liz (Host)
Things just have to be so different from what you imagined they would be. 

18:47 - Wendy (Guest)
When I figured out that I had an narcolepsy. I was diagnosed and then they tried to put me on medication. I was taking modafinil, but when I started to take it it was to the point where my body was so sensitive to the medication. I don't know if it was so young or if it has to do with the fact that I'm just generally sensitive overall to temperature and sound and a bunch of different things. I've always been really sensitive to those things, to those things. So I don't know if it relates to that or if it was because I was as young as I was. But they had me try and take modafinil and then later they had me on venlafaxine to try and help with the cataplexy. Well, we had to try and adjust the doses because the side effects were so severe that people thought I was on hard drugs, like it was really bad. I was constantly like chewing on the sides of my cheek and like my gums, to the point like sometimes they would start bleeding because I couldn't stop. I was constantly like bouncing my leg. My pupils were dilated, so so big that people were like is there something wrong with you? And so we had to try and adjust the doses to the point I was taking a quarter of a pill and those side effects were still happening. And so eventually I was just like I'd rather deal with a different medication or something, because this is not the way I want to live my life. I want to live my life. 

20:50
And so we talked to my doctor and she was like, okay, well, the only other things that I can give you are still in the testing processes. They're not approved for children as young as you are. And so she tried to give me for children as young as you are. And so she tried to give me xyrem or xywave, um, but she didn't know how it would affect me because I was so young. 

21:16
And so I was talking with my mom and we were like we don't want to go through the experience of medicine affecting me like that again if it's not for sure how it will affect me, like you don't know for sure what the side effects are going to be. And so I didn't want to be like a test subject or like a lab rat. You know, I wanted something that I would know what the side effects were, but I was so sensitive to the medication that we just decided that I'd rather deal with the symptoms of my narcolepsy over taking that medicine and feeling the way I did every day. So I am now unmedicated. I've been unmedicated for a couple years. I think that's probably why my case is a lot more severe is because I don't take anything for it. 

22:15 - Liz (Host)
Wow, what a journey with the medication. What is it actually like, or how do you manage your symptoms day to day? Do you have any kind of strategies that you use, or do you just kind of go with the flow of all the symptoms? 

22:45 - Wendy (Guest)
I try to schedule naps around like my daily schedule. So I try to take one in the afternoon, try and keep it to 30 minutes to an hour, because any longer would kind of like affect sleepiness. But a lot of the times it doesn't do much. But a lot of the times it doesn't do much. My main thing I have to work around is high school. So I have accommodations in place. I don't have an official 504 plan or IEP or anything like that, because we figured, you know, like my teachers can just follow the accommodations. It's not really something that we need to officially put in place because it would be a lot of paperwork for them, a lot of paperwork for me. So we kind of just decided, hey, we'll give you the accommodations you need, which I kind of wish. 

23:35
Going back I could have put a 504 in place because now that I'm going into college I have no documentation that those accommodations were in place. So I kind of just have to base it off of an email and hope that's enough to get me accommodations for going into college. But I do have the ability to go into a back room and nap if I'm feeling that way during class. I've never actually used that accommodation, but it is something that's offered to me, and most of the time if I fall asleep in class, my teachers just kind of let me because they know waking me up isn't really going to do much because I'll just fall back asleep. So I have that accommodation and then occasionally I'm allowed an extended deadline. If I can't finish something in class when it's needed to be finished, I can just finish it outside of class and turn it in as soon as possible. The main thing I've kind of had to work around is school, so my accommodations have really helped. 

24:39 - Liz (Host)
And how have you managed academically, despite having the challenges of narcolepsy? 

24:46 - Wendy (Guest)
I'm actually a full honors student, so I take full honors courses. I have straight A's. A lot of my work has had to be done outside of school in order to keep up with that, but in the long run I feel it's a big accomplishment for me to say that I'm going to graduate with an honours diploma. 

25:12 - Liz (Host)
As someone with narcolepsy, Wow, you must be a very hard worker to get that. Definitely, do you think having narcolepsy has made you more motivated to achieve those things? 

25:27 - Wendy (Guest)
Absolutely. I also take college classes on the side to try and get ahead of my gen ed credits for when I do go to college. But I feel like because I have narcolepsy, so many people underestimate the things I can do, epilepsy, so many people underestimate the things I can do, and so it just kind of pushes me all that much more to prove them wrong and to say, hey, I can do this just the same as you could, amazing. 

25:58 - Liz (Host)
I feel like that feeling never goes away of wanting to prove people wrong and be like I can do it too. Yeah, and how did your family react to you developing narcolepsy or having a diagnosis? 

26:16 - Wendy (Guest)
I feel like it kind of didn't affect. It didn't affect them all that much. Um, it was kind of like a oh well, you know, that makes sense. So it's kind of been a struggle to deal with getting me to doctor's appointments and all that. I'm actually being referred to another neurologist since I've turned 18, so I will have that upcoming appointment to go to. But I feel like my family kind of looked back and was like you know, it all makes sense now. So it wasn't really a big thing that changed any sort of dynamic or anything. It just kind of was an addition to who I am and have they been supportive with the narcolepsy. 

27:12
Some more than others. My mom is definitely one of my biggest supporters. She's the one who drives me to all of my appointments in Phoenix or wherever I need to go. I have very big scheduling anxiety and like phone call anxiety, so she kind of makes all my phone calls for me, which has been a big help. Others, though, like sibling dynamics. My sister can be chaotic. She will sometimes purposely make me laugh so that I'll fall down because it's a funny thing to younger siblings. Just kind of a chaotic dynamic of siblings of siblings, but they've been pretty supportive. 

28:10 - Liz (Host)
Yeah, that's definitely a weapon they can use against you. Cause a cataplexy attack so that you're down and out. Yeah, and is there anything that you would want your family to? 

28:27 - Wendy (Guest)
know or understand about narcolepsy that you feel like they don't really get. Sometimes I feel like they don't understand that I'm not just a normal teenager and that when I do all of the things that I'm doing all my honours work, my college classes, all of that I'm doing it on top of narcolepsy, and so it's not like I'm just putting in all the work that I'm doing and everything and then doing my theater and all of that. I'm also doing it while I'm extremely tired, and so sometimes I need the breaks, I need to take naps or just to relax. 

29:09 - Liz (Host)
Sometimes I feel like people don't understand that I need more breaks than the average person, so that's definitely something that I would like other people to know yeah, I totally agree with that and I think there's something about it about narcolepsy being a hidden disability, which means that a lot of us we do manage well on the outside. So other people don't realize, like how hard we're working beneath the surface to keep everything going, so that when we do need extra support they're like oh, but like you'd be managing fine, right, like you. Just, you know you take your naps and you then you bounce back and you're all good, but it's like no, there's so much more that goes on that you don't see yeah, I feel like that's something that I feel like with a lot of people. 

30:02 - Wendy (Guest)
It's that way because a lot of people will say, oh well, you don't look like you have narcolepsy and I'm like, okay, well, what does someone with narcolepsy really look like, you know, or okay, but can't you just take a nap and be fine? And some, some people don't really understand that, like it's not, it's not how it works, it's not just I take a nap and I'm better. It's a lot more to it than that. I've had people, when I tell them what narcolepsy is, be like oh my gosh, I wish I had that. 

30:40
I wish I could sleep all day. I wish I could sleep all day. I wish I could sleep during class and not get in trouble. And I'm like you really, really don't, because you don't have control over when you sleep. You don't know when it's going to happen, and there's always that fear in the back of your mind of any daily activity that I'm doing. I could fall asleep during this. Anything that I do, I have to kind of take into account this could be a dangerous thing to do, and am I willing to take the risk of doing something dangerous if I could fall asleep? 

31:24 - Liz (Host)
Yeah, it's that constant feeling of a loss of control and, just yeah, not knowing what's going to happen and having to plan for the worst every time yeah, I know, my freshman year I took a carpentry class and there was always like the fear of what if something goes wrong while I'm doing this? 

31:49 - Wendy (Guest)
And then theater there's always the fear of hey, what if I fall asleep and miss a cue? Or what if I fall asleep on stage and I ruin the whole production? Or driving I still haven't gotten my license yet because of the fear of what if I crash this car? What if I swerve off the road? 

32:12 - Liz (Host)
because I can't control when I fall asleep and when other people have said really stupid stuff to you, like oh, I wish I had narcolepsy, how do you? 

32:29 - Wendy (Guest)
deal with that. Most of the time I try to just ignore it because I know they're teenagers and explaining it's not really going to do anything. It's not really going to click in their head that oh okay. It's just kind of a thing that if I try to explain it it's not really going to be fully understood because these are teenagers. 

32:56 - Liz (Host)
So I kind of, if it's not someone who's important that I interact with, a lot of the time I to just ignore it, walk away good plan and save yourself that energy of having to explain it to people over and over again when they're probably not going to take it on board anyway. 

33:17 - Wendy (Guest)
Yeah, I think that's kind of why I started my advocacy Instagram account. Uh, for narcolepsy is because anytime someone asks me, I don't really have to explain it as much. I can just be like, hey, here you go, look at this, and then they have all the information in their hands and then they can ask me questions afterwards. So it saves me a lot of energy while also kind of informing the general population about it, and I really like that and what inspired you to create your advocacy page? 

33:54
I don't really know. I like to inform people of things and I really like graphic design, I love creative aspects of things, and so I just one day kind of started playing around with Canva and was designing different things and I was like, hey, you know, like it'd be kind of cool if I could incorporate narcolepsy into this, because this is kind of a big part of who I am. And I kind of started making my little infographics and posting them, and that kind of became what it is. 

34:30 - Liz (Host)
Nice and do you want to tell everyone your handle so they can follow you Dazed and dozing? Perfect, thank you. So how does or how did narcolepsy affect your social life, particularly when you were first diagnosed and then in middle school and high school? 

34:53 - Wendy (Guest)
At first it wasn't really a big thing, but I feel like as I've gotten older, a lot more people I have become a lot more judgmental about it and have kind of been a lot more picky with the things that they invite me to. Because I don't, because there's the chance of, oh well, you're not even going to show up, or oh well, you might just sleep through the whole thing. Sleep through the whole thing Because we live in such a small town. Most of the time the only things that there really are to do are bowling, the movies or going to the river. And so if we go to the movies, there's the chance that I'll sleep through the movie. 

35:39
And people are like, oh well, you know, that's kind of a waste of money, like why would we invite you if you're just going to sleep through the whole thing? You know, going to the river, it's oh well, you're probably going to take a nap because the river wears you out, you know. And then bowling same sort of deal. So a lot of the time I feel like people just think that oh well, you know, if you're not going to come anyways, or you're not, if you're just going to sleep through the whole thing, then like what's the point of inviting you at all? And so that's kind of been really hard. My friend group has kind of been narrowed down to a close two or three people, and then most of the time I hang out with my boyfriend. Other than that, most people don't really invite me to things. So I kind of try and do the best I can with my alone time. 

36:35 - Liz (Host)
I like to do a lot of reading and video games and my graphic design kind of work on my hobbies to spend my time rather than spending it with people who don't really understand me yeah, definitely, and I think I think that's something that a lot of us have had to go through is actually kind of cutting out people who just don't get it or aren't willing to try to understand, and in the long run it feels like maybe we're better off without those people, but it doesn't make it any less painful along the way yeah, a lot to what to deal with, and especially as a teenager, because at that age all you want to do is hang out with your friends and do everything that everyone else does, and go to the parties or, yeah, go to the things and do the things they're doing to focus on the things I do in my alone time and focusing on my hobbies and kind of the self-development, rather than putting all my energy into other people. 

37:54
Yeah, and what would you like those people to know about you and about narcolepsy? 

38:01 - Wendy (Guest)
I guess just that, despite having narcolepsy and despite all of the challenges that it gives me, that I'm still a person and I still have the same feelings that any other person would. But it's a lot for me to deal with and to just be patient. And you know, yeah, wise words it's so tricky, isn't it? 

38:37
because we still want to be invited to things, even if we can't go necessarily yeah, it's kind of kind of the, the principle of the matter of hey, at least, at least they were thinking about me and you want it to be our choice, whether we go or not, not someone else just being like, oh, like they're going to be too tired anyway, and just making that assumption because narcolepsy by itself has taken a lot of control from me and I don't want other people to take even more of that control, because then I have no choices left to make, because all of them are being made for me, and that's not a very nice feeling. 

39:22 - Liz (Host)
Yeah, what would you advise to other people who are a similar age, who are going? 

39:28 - Wendy (Guest)
through that. It definitely helps a lot to explore different things on your own. Explore your own hobbies, explore, think a lot about what you want to do and who you want to be, and are these people really worth the energy of dealing with the social drain that they provide, and just kind of focus a lot more on self-development than latching yourself to other people and constantly wanting to be with other people. Find a very close few that you would like to spend your time with. I definitely wouldn't push for a really big group because it can create a lot of drama, but definitely focus a lot more on a close few and yourself. 

40:22 - Liz (Host)
Yeah. So it's like finding that kind of strength within yourself and nurturing that and then also having that close circle around you that you can trust. I'm sure a lot of our younger listeners as well will be very excited to hear that you've got a boyfriend and that it's possible for someone with narcolepsy to have a relationship as well yeah, um, he actually has ADHD and so we kind of support each other. 

40:57 - Wendy (Guest)
Um, it's definitely very difficult to try and maintain, but I feel like a big aspect of it is actively communicating, because he supports me when I fall asleep and everything. But sometimes it can be really hard because I'll sleep through a lot of things If we watch movies or we go on dates or anything like that sleep through a lot of it. But he kind of just knows that I don't have control over that, just the same as I know that when he forgets things or he gets distracted really easily, he doesn't have control over that. 

41:37 - Liz (Host)
So we kind of have a mutual understanding of those things and what was it like to open up to him about having narcolepsy, and when did you decide to do that in your kind of dating or wherever you were at the time? 

41:53 - Wendy (Guest)
I'm pretty open about it with most people. A lot of people around me know, oh, that's kind of who she is Like, that's, that's the girl with narcolepsy. It's kind of the way people see me at school. So we met through a photography class when we were at school and we ended up doing a theater production together and, um, one of our friends one of our friends was like, oh, she likes you. And then I was like, oh, he likes you. And so we kind of just like cool. But I think I told him a couple weeks into us dating that I had narcolepsy, just because I kind of forget who I tell and who I don't. And so one day I kind of like slept, I think. I think I like slept through something, and he was like you slept for a really long time. 

42:50 - Liz (Host)
I was like, oh, by the way, um, I have narcolepsy so, yeah, good to tell him that, so he doesn't just think you're like bored of him and just, yeah, good time to have a nap. Yeah, it's quite interesting as well, because I feel like often people who are different in some way are drawn to each other yeah, um, there's kind of people. 

43:20 - Wendy (Guest)
people say opposites attract, but I feel like you definitely have to have some similarities and stuff. And I feel like, because we both kind of have something different about us the narcolepsy and the ADHD it's kind of something that gives us a better understanding with each other, whereas if I were dating someone who was completely, completely healthy, didn't have anything wrong with them, I feel like it would be a lot harder for them to understand that I don't have control over what I do, whereas because he has ADHD, he understands that there is that lack of control when there's something going on that having a support factor for really helps. 

44:08 - Liz (Host)
Yeah, definitely I can imagine. And how has narcolepsy affected your mental health? Because obviously being a teenager is so difficult anyway with hormones and just going through all the things that teenagers go through, so has that added any extra kind of pressure onto that? 

44:33 - Wendy (Guest)
yes, definitely. Um, I have generalized anxiety disorder. I go to therapy once a week for it, mainly for social situations and stuff. But the narcolepsy definitely does contribute to that because of the kind of divide it creates with people. 

44:53 - Liz (Host)
I've managed to work around it and I'm definitely working through it, which therapy helps with, but it definitely has increased my anxiety a bit in situations yeah, it's a long process and I can totally relate to that because I just feel like of course we're going to feel anxious in social situations because we're not in control of how awake we are and when our brain starts like switching off, I find it so hard to then read social situations and I start like interrupting people or like not being able to follow what they're talking about or getting like brain fog so I have nothing to say back and then I get really anxious because I'm not engaging socially how I would want to. 

45:44 - Wendy (Guest)
Absolutely it kind of doubles back to the whole fear in the back of your mind of what could happen during this situation, or the anxiety of, like, how, how are people going to respond to this and everything. And the brain fog has definitely been a big thing because with, like, the automatic behaviors or anything like this, I will continue doing something or I'll continue talking to someone and they'll have no clue what I'm talking about and I'm like, oh no, I could say something completely embarrassing. I completely embarrass myself and they won't understand that I didn't mean to say any of that because I couldn't control what I was saying. 

46:28 - Liz (Host)
I was at a social event last night and it was just kind of a small group, but one of the people I don't know as well which always like puts me on edge a little bit because I'm like, oh, if I have like symptoms or a sleep attack, like how are they going to react to that? And we had a big meal and I ate loads of bread, which I knew was a mistake and then after the meal I just started to get like a sleep attack coming on. So I was like fidgeting and then I asked to have like a cup of tea to try and keep me awake. That didn't really help, so I kept having to like go and stand outside to get like fresh air. Um, and honestly, like half of that conversation, I don't have a clue. What I said could have been talking about anything. 

47:14 - Wendy (Guest)
Yeah, I remember, um, I was on a phone call with one of my friends and it was one of my friends that I had met more recently and we were talking. We were having a conversation. I don't remember what the conversation was about, but I had ended up falling asleep. Who is she talking to? And she was like, what do you mean? We were having a full conversation and I was like what, what do you mean? And she ended up playing back like the voice messages or whatever that. I can't remember if it was like a phone call or voice messages, but she ended up like playing it back and I was saying a bunch of stuff about like how I love sun chips and a bunch of different things. I don't like sun chips at all. I don't. I don't remember why I was saying that, but it's kind of really weird to think of, like I could say anything to this person in this moment and I have no idea what I'm saying. And I have no idea what I'm saying I. 

48:29 - Liz (Host)
I won't remember it at all and that's like scary but also a little funny. Yeah, it's definitely one of the weirder side effects of, or the symptoms of, narcolepsy. Yeah, I had another bad situation actually where I met my friend for the day and she was going through quite a bad breakup, um, and she was talking about it and I started having a sleep attack kind of, whilst we were walking. So it's not like I was gonna drop down asleep, but my brain started turning off and I was trying so hard to give her like good advice, but I just could not follow the conversation. I was like I'm so sorry, like I really care, but I'm could not follow the conversation. And I was like I'm so sorry, like I really care, but I'm so sleepy right now I just can't like be useful in this situation. 

49:11 - Wendy (Guest)
Yeah, just recently I had a situation where I was with my boyfriend, we were at lunch and we were eating, we were having a conversation, everything was normal, and then all of a sudden I couldn't move my fingers and my eyelids just started to close and it was cataplexy, but I wasn't having any strong emotion or anything that I was aware of, and so it was really scary. And he was like what's happening, are you okay? And then I went to try and tell him I was okay, but I couldn't speak, my mouth wasn't moving and it was really scary because I was having cataplexy just in the middle of a conversation, nothing. And I ended up going home, going home early that day. But it was really scary because like I had no clue what was happening and it was just so sudden and like it was something that was kind of something I've never really experienced before. That was kind of the first time I experienced something like that, where I got cataplexy without laughing or without feeling any sort of overwhelming emotion. So that was, that was an experience. 

50:33 - Liz (Host)
Wow, and there's so many different things that can set it off, I think, for different people, like even just I don't know feeling like joy or contentment, or I've even had it before when I've really been enjoying food and that's all I saw a girl who her cataplexy was triggered like every, or like her sleep attacks were triggered every time she ate yams. 

51:01 - Wendy (Guest)
I think that's really interesting that like food could be a trigger or like temperature. 

51:06 - Liz (Host)
Yeah, so many different things, but hopefully that doesn't happen again for you when you work out what was triggering it, instead of it just coming on yeah, kind of a process of elimination. 

51:18 - Wendy (Guest)
You got to kind of figure out what could be triggering it. And I know mine is definitely triggered by heat or like exercise or different things like that. 

51:28 - Liz (Host)
So kind of got to figure out in the moment like what could be triggering this yeah, like whilst your body is slowly shutting down but your brain is still awake, you're like, okay, what have I just done that has caused this? Yeah, yeah. Do you have any like role models or people in the community that help you? And when I say community, I mean like the narcolepsy community or any support from other people that have narcolepsy at? 

52:00 - Wendy (Guest)
all, I don't think I've really ever interacted with many people that also have narcolepsy. So I interact with a few people on my narcolepsy Instagram account just like following them and everything, but I've never really closely interacted with another person that has narcolepsy. I think this is my first time ever talking to someone who also has narcolepsy. 

52:26 - Liz (Host)
Wow, yeah, that's really cool. I would highly recommend getting involved in narcolepsy community in some way, just because, like, even doing this podcast for me has totally normalized narcolepsy for me and makes me feel much less isolated Because I'm always talking to people who are experiencing very similar things and, yeah, it's a nice feeling, definitely. 

52:56 - Wendy (Guest)
That's a really cool thing. I think the idea of having a podcast is really cool. It's definitely the first kind of experience I've had like this. Being having a podcast is really cool. It's definitely first kind of experience I've had like this being on a podcast. 

53:10 - Liz (Host)
It's really exciting but really scary yeah, it's a brave thing to do, because you're opening up about something that is often hidden right and not many people will know that much depth about it. For you. 

53:25 - Wendy (Guest)
Yeah, it's kind of putting that part of myself very publicly out there is really scary, but it's also kind of empowering to kind of interact with other people that have something similar to what I do, and it's really cool yeah, well, I've been uh very happy to have you on the podcast today. 

53:50 - Liz (Host)
What do you think the future kind of looks like for you in the next few years? Have you got any set plans or? 

53:56 - Wendy (Guest)
yeah, what's your aims? I was just accepted into into Arizona State University. I'm going to be a film production major and possibly minor in early childhood education. So go to college for a couple years. I want to try and do some babysitting on the side because I love to work with children, and especially children who have kind of like special needs, kind of like I do so like if a child were to experience narcolepsy. I feel like interacting with them on a level that they have someone to understand them. I feel like that's really it's a really special connection and so I really like working with kids. Um, I hope to babysit professionally on the side during college, then after that, uh, maybe travel a bit. I I really want to see Europe amazing. 

55:00 - Liz (Host)
Come over to London. Yeah, come visit. That visit that would be cool. It sounds like you have some amazing plans, and congrats for getting into uni college. Thank you, you sound like you would be a good occupational therapist. 

55:19 - Wendy (Guest)
I was originally going to go into psychology but I felt like with my own anxiety originally going to go into psychology, but I felt like with my own anxiety it'd kind of be difficult to deal with other people's anxiety as well, so it wouldn't be the best career for me. So, kind of exploring my more creative aspects I've done theater, might as well do some film on top of it. I really like the idea of creating a series or a film that explores different disorders that are kind of misrepresented in media. Because I know narcolepsy is kind of a more comedic thing, I'd like to explore the more serious aspects of it in a film. I think that'd be really cool wow, I love that idea. 

56:05
Please do that absolutely, that's really cool. 

56:16 - Liz (Host)
I've got one more question for you and then I will let you crack on with your day. Okay, so you might have heard this on other episodes if you could press a red button and totally get rid of narcolepsy and never have experienced it, would you do it? And why no? 

56:35 - Wendy (Guest)
I I don't think I would, because it's definitely a really big part of who I am. I feel like and while it's not like totally a defining feature of who I am, but it's, it's a part of me and I feel like it just wouldn't be the same yeah, I wouldn't have the same life experience I do without it and I just feel like it's made me a lot more mature, a lot more understanding of others, and I like that amazing. 

57:10 - Liz (Host)
Thanks for sharing, wendy. Well, thank you so much for coming on the show and I'm very honored to be one of the first people that you've spoken to that also has narcolepsy. 

57:22 - Wendy (Guest)
I had a very great time talking to you. It's been an honour being on the podcast. 

57:29 - Liz (Host)
I like to end the show by it's a bit cringe but I really enjoy it saying everyone to say happy napping. 

57:38 - Wendy (Guest)
Happy napping, Happy napping everyone. 

57:43 - Liz (Host)
Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice. Narcolepsy navigators is produced by a team of volunteers working for the Naps for Life CIC, which is a non-profit group dedicated to improving the lives of people with sleep disorders through community action. You can help grow our podcast and join our sleep disorder support group by visiting the website wwwnapsforlifecom. If you or someone you know has a sleep disorder and would like to share your story on Narcolepsy Navigators, please email us at narcolepsynavigators at gmailcom. You can also support us by donating at the website. Happy napping everyone. One.