S4E2: Firefighter, EMT, Advocate: Tara O'Connor Redefines What’s Possible with Narcolepsy

In this episode of NAR Lipsey Navigators, hosted by Kerly and Liz, the spotlight is on Tara, a 27-year-old woman from Maine who has been living with narcolepsy type 1. Tara shares her story, from being misdiagnosed with ADHD and ODD as a child to finally receiving the correct diagnosis at 22. She discusses her struggles with maintaining jobs, her journey through various treatments, and the significant lifestyle changes she implemented after her diagnosis. Tara's advocacy work, including her role as a patient ambassador for WSG and her social media presence, underscores her commitment to raising awareness about narcolepsy. The episode also delves into the challenges and triumphs of living with a chronic sleep disorder, offering a poignant look at resilience and self-advocacy.

Episode Out Now! 

Link: https://www.napsforlife.com/podcast/episode/81863df7/s4e2-firefighter-emt-advocate-tara-oconnor-redefines-whats-possible-with-narcolepsy

Transcript

                                          
KERLY: [00:00:00] Hello, welcome. You're listening to season four of Narcolepsy Navigators, brought to you by NAPS For Live 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 Kerry Bwoga, 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 [00:01:00] 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 patron merch, or if a monthly subscription is not in your budget, you can check out even more merch on our website.
www naps four life.com. Hi everyone. Welcome to Narcolepsy Navigators. I'm Kelly, your host. I have narcolepsy type one, and I'm Liz, the co-host, and I also have narcolepsy with Cataplexy. And today we are here with Tara and welcome to her story. So, um, Tara, how's your weekend been? 
TARA: Um, my weekend's been pretty good.
Um, just kind of recouping and getting ready for the week. 
KERLY: And Liz, how's your weekend been? 
LIZ: It's been okay. Not the best because I've been, um, struck down by a cold and I was meant to see my step sibling [00:02:00] in tariff yesterday. He's come over from America. I was like, felt so ill and so fatigued that I just couldn't go.
So I, I'm not gonna get to see them. And so it's probably gonna be about another five years before I see them again, but nevermind. Just very unlucky to get a cold. And then obviously on top of narcolepsy, that makes it very hard to do anything. But it's just one of those things. And how's your week 
KERLY: been?
Um, my weekend has been the opposite of what I expected it to be. So on Friday I had a CapEx attack and it fell and twisted my ankle, and then it got swollen. So from Friday. I thought I had just get, get some cleaning done and then go to church on Saturday and then rest on Sunday. And it turned out that way because when I got home it was swollen really big, so I had to ice it.
So I've been basically just icing and elevating the leg all weekend. So hopefully it's [00:03:00] gone down in now by tomorrow that I don't have to like go to the doctors or something. 
LIZ: What usually triggers your cataplexy attacks? 
KERLY: Well usually it's laughter, but I wasn't laughing or anything. I just dunno. I haven't had a fall like that in probably like two years.
It was just so dramatic. One minute I was standing up, the next minute I was on the floor and I had like fallen really, really hard. That's horrible. Yeah. And my phone went flying and trust me, London streets are dirty. You're on the fall. Like were you with anyone? No, I was by myself. Did anyone help? No, I was in the back roads, so, uh Okay.
I hope your ankle feels better soon. Yeah, me too. So Tara, um, if you could introduce yourself. 
TARA: Yeah. Um, so I'm Tara and I am in Maine and I am 27. I'll be 28 later this month. Uh, and I have narcolepsy type one. I was diagnosed in 2019. Okay. Not that long ago. [00:04:00] No. But I had symptoms since I was two, so I was, it took me 20 years to get diagnosed.
I was like, that's a 22. 
LIZ: Oh my gosh. What kind of symptoms do you either remember having as young as two or do your parents report that you had? 
TARA: Yeah, so I had strep a ton when I was a baby, and then my tonsils out right before I turned two. And my parents said I was never the same. I remember, um, like I was misdiagnosed with things like a DHD and ODD.
Which in kids it shows differently. And so it mimics those things. Um, well, it's a DD oppositional defiant disorder, so acting out in, um, stuff like that, which, that's how it shows in kids with narcolepsy. My doctor told me, I just grew out of it when can't really just grow out of it. So that should have been a red flag, but I always felt like something was off my whole life.
I just [00:05:00] didn't know what. I remember having like hallucinations and sleep paralysis a lot and my parents just were like, oh, they're just bad dreams. 'cause I mean they didn't know better. And then I did have cataplexy, I have it mildly. I remember like I was always the clumsy one falling randomly or dropping things randomly.
Or like there was times where I was jumping on the trampoline with my friends and my niece would buckle 'cause they would make me laugh. And then as I got into like middle school and high school, that's when the sleepiness really just took over. I always remembered though, even when I was young, I would always fall asleep in the car right away.
But then I think it got worse in middle school and high school. 
LIZ: What is your earliest memory of narcolepsy symptoms? 
TARA: Um, I mean, I don't really remember life without narcolepsy because I don't really remember anything before too. Like, I think sleep paralysis and [00:06:00] hallucinations were probably the biggest ones because I always just thought they were bad dreams, but I was afraid to sleep alone until I was like 12 or 13.
Like I still remember some of the things I would see, or like I would always think someone was peeping in my window or knocking on my door and stuff like that. 
KERLY: That must have been very scary for a child. 
LIZ: Yeah, I just thought they were bad dreams. Do you think having those symptoms at a really young age affected your personality as a child?
TARA: I think so, because I always felt like something was off. I just didn't know what, and I feel like. If I would've had lengthened diagnosis sooner or like didn't get misdiagnosed with so many things, I would've been a lot happier as a kid, I guess you could say. I was misdiagnosed with all these things and I was an angry kid because I didn't know what was going on and nobody knew what was going on.
Do you have any siblings? I do have an older sister. [00:07:00] 
KERLY: Sorry. And did that also make it very obvious to you because she wasn't having the same bad dreams as you and things like that? 
TARA: Um, I mean, not a ton because she's four and a half years older than me. After a while when I, my parents and stuff just said it was a bad dream, I kind of just stopped talking about it because I was like, oh, I'm just having bad dreams.
LIZ: I was so interested in the fact that you got diagnosed or misdiagnosed with A DHD and ODD, and I'm wondering, can you tell us more about how. Narcolepsy presents in children that would've led to you getting misdiagnosed with those? 
TARA: Yeah, so in kids it's in kids it shows as aggressiveness and attentiveness, hyperactive because they don't know how to express themselves and they don't know what they're experiencing isn't normal.
And so in A DHD, the hyperactivity and in effectiveness that are, those are symptoms of that. [00:08:00] And it's hard because with A DHD and narcolepsy, the stimulants are very similar or the same, so it's like it could help for a little bit, but it doesn't help the sleep. So it's eventually not enough. 
KERLY: I did meet a family once at a conference and a girl had just been diagnosed and she was five years old, and when she started having her symptoms, this aggressive behavior you're talking about.
That started, she used to eat all food and then she started throwing the food and saying how like she didn't want it or she didn't want to eat certain colors and like all this type of thing. And she's never liked this before. So they thought that she had a brain tumor and it was pressing on her, changing her personality.
'cause her personality had changed so dramatically, just a short space of time. And then the mom goes, and then when they did all the tests and they all came back negative. And then finally they did sleep study, which was never even a thought of them to do, but they're like exhausting all the things. And they were so [00:09:00] surprised to find out that she had narcolepsy.
And she goes, she was really sad and she cried because she goes at least the brain tumor, they could take it out. Narcolepsy she has to live with for the rest of her life. 
TARA: Yeah. 
KERLY: And while she will learn to adjust to it as she gets older, how do you explain to a child a five-year-old, how does a five-year-old explain to another, another five-year-old why this is happening to them, or you know, what is happening?
LIZ: Yeah, that's tough. Do you think having the misdiagnosis of A DHD and ODD shaped your view of yourself? 
TARA: I mean, it's hard because I was a kid. I mean, I was also misdiagnosed with anxiety and depression in middle school and high school. Um, but I, I think those kind of affected me more than the others just because I was so young when I was diagnosed with those and I was just so angry as a kid.
Um. But yeah, like the depression and anxiety I think [00:10:00] affected me more because when they had me try all these different antidepressants, none of them ever worked. I would say, oh, this doesn't work. Or like, this isn't working. They're like, okay, let's try this one. And it's like, this one isn't working. And they just kept trying different ones.
And I just got to the point where I was like, this is doing nothing. I'm not gonna take this. That was a couple of years, or probably a year or so before I was diagnosed. 
KERLY: Do you think that you were angry because you felt like you just kept getting sick, getting one sickness off to another? You know, like they're diagnosed you with one thing and then they diagnosed you with something else and then with something else.
Do you think that's why you are angry? 
TARA: Yeah. I don't know if it was that or if it was just the fact that I could tell something was off, but like none of the medications they gave me or nothing, they ever tried worked. And so I was just frustrated and yeah, I don't know. It's, it's hard to say. 
KERLY: So at what point, you said that after middle school and when you were going got to high school, it changed and it started to get, become a bit more aggressive.[00:11:00] 
TARA: It was more like, like my symptoms started to really get worse. Mm-hmm. Like the sleepiness and stuff. And again, middle school my doctor told me, that's when they told me I outgrew the ODD. Then my sleepiness started happening and a lot of things my freshman year of high school was. Probably one of the worst years I've ever had because I had my gallbladder out when I was 15 and I had, I hyperextended my knee when I was 15 and I found out I was allergic to ibuprofen when I was 15, all the second half of my freshman year, and I barely made it through finals 'cause of my gallbladder.
Then after that I just, I think the sleepiness really just kept kicking in. And I think like, 'cause I used to love school in elementary school and I wanted to be a teacher. But then in middle school and high school, a lot happened and I started educating school and trying every excuse to stay home. But I think it was just mainly [00:12:00] because I was so tired.
I wanted to sleep. 
KERLY: How were the teachers and stuff, were they helpful in giving you like accommodations or trying to understand why you were not able to keep up with everyone else, or No, not really. 
TARA: No. I was told, um, I didn't have strong enough diagnosis to get accommodations. Oh yeah. That's so difficult.
So I didn't get anything. Oh, wow. Yeah. So I think that made a huge impact too.
KERLY: What was the breaking point that led you to finally get diagnosed? 
TARA: Um, so I was 22 and I was, um, just falling asleep a lot while driving and that's when I was like, something's like wrong. But I still would talk to doctors like my family doctors, and I even had a sleep study when I was 18 and they missed it.
They [00:13:00] basically were just looking for sleep apnea and said, well, even your test was normal. There's nothing else we could do. I actually had early onset REM during that sleep study, but they just didn't really care because it wasn't sleep apnea. I was seeing a pain doctor for one of my other health conditions and he one day asked me, how's your sleep?
I said, honestly, I could sleep 24 7 and still be exhausted. He's like, that's not normal. And so sent me to a different sleep specialist and I got diagnosed. 
KERLY: Oh, wow. Well, thank you to that doctor for asking that question. Yeah. And it's just amazing how if you don't answer the right questions, you don't get the right results.
LIZ: Right. How did you feel when you were finally diagnosed with narcolepsy? 
TARA: I was relieved, but also was kind of nervous because I had never heard of it before and I didn't know what to expect. I was relieved because a lot of time in my, like late teens and [00:14:00] early twenties, I was told that I was lazy and I was thinking it and it was just in my head and I was using it as an excuse and I, when I was finally diagnosed, I was like.
Wow. It's not just in my head like there's actually a name for it. Then just nervous because I had no idea what to expect. 
LIZ: And what did, hearing all that at a younger age, how did that make you feel? People saying You are lazy, it's in your head, that kind of thing. 
TARA: I mean, it definitely didn't feel great. I mean, it got to the point where, I mean, it was so many people in my life and I lost so many relationships, like friendships and all that stuff.
Because they just didn't understand, and I started to think, well, maybe it is just in my head. Like it started to make me think like that, but I definitely don't think like that anymore. 
KERLY: That's good. 
LIZ: Did 
TARA: that 
LIZ: dictate or impact where you went after high school or what you did study-wise or career-wise? So, 
TARA: [00:15:00] yeah, I mean a little bit.
I would say I was, because I barely graduated high school and I went to college for a year, but then that was it until recently. I was going to school and I became an EMT. So like on the ambulance and stuff, I became a really interested in the health field and after so many years of my life wanting to be a teacher, I think just idea of four years of school, I was like, I'm not doing that.
I was just like, I don't wanna go to school that long. Um, but I mean, I couldn't keep a job after high school and I, like, I could go to school and that was it, type of thing. I wasn't even going to school full time, so it was just a lot. So you finished high 
LIZ: school, but that was a struggle. And then you said, did you do college for a year?
TARA: Yeah, so I just took some classes for [00:16:00] one semester and then I took the EMT class the next semester and I ended up not passing that time. So then I took it that following fall semester again and I passed, and then that was all the schooling I did for a few years. So what was it like being at EMT? Um, I mean, it was tough.
I couldn't really do. Most of the jobs around Iowa where I was living at the time, they are like, you have to do 24 hour shifts and I couldn't do that 24 hours. That's how it is for a lot of things. Yeah. How does anyone do that? Because they don't necessarily work 24 hours. They, I mean, they're at the station or whatever, and it's just like they sleep at night unless they get a call type of thing.
That was right before I was diagnosed that I had finished school. I was 22 I think, or 21 [00:17:00] or 22 at the time when I was first diagnosed or when I was finished the EMT class. 
KERLY: So then what did you do after the EMT? 
TARA: Um, I tried to work but still couldn't keep a job. Then I ended up moving back home and living with them for a few years.
In that time is when I got diagnosed and then I started to try to find the right management and all that stuff, and then I was working full-time as like a para. Which is like, uh, some places call it an ed tech, so it's like in the schools working, kind of like as an assistant in a way. But I was doing that full time and then I just started having issues with a different health condition and then COVID hit and that was really tough.
And then after COVID and stuff, I decided I wanted to go back to [00:18:00] school, and so I went back to school. 
LIZ: Just before you got diagnosed in that kind of period where you were trying to have a job, but it was difficult to hold it down, did you feel like actually there is something else going on? Or had you kind of just accepted, oh, these are, I've been given these diagnoses.
That just must be it. 
TARA: I mean, I always, I never really thought I had anxiety or depression. Then at that time, I wasn't diagnosed with A DHD or ODD anymore. And so I just, I knew something wasn't right, but I just didn't know what, and I also didn't know that what I was experiencing wasn't normal. Like I didn't know what it was.
Like I could tell something was off, I just didn't know what, and it's like, well, the reason I couldn't keep jobs is because I was. Tired all the time and I would be late or just calling out sick or something like that and just got to be too much. Did it [00:19:00] affect 
LIZ: your relationship with your friends and family at all?
TARA: Yeah, um, I lost a lot of friendships and my family. They also, at the time they also were, some of the ones saying that it was all in my head. I was using an excuse, I was faking it. They're much better now, but, um, I think they just. Didn't know either, so I mean, it's not their fault. It's, it was tough. I mean, and I didn't have a lot of friends ever since high school.
When I started missing out on a lot of things, I started to lose like friendships and stuff. Then 
KERLY: you, sorry, you had to go through that. 
TARA: I think it made me who I am today though, 
KERLY: make you stronger. Were there any friends that stuck around the whole time and managed to stay until after the diagnosis? Nope.
No, no. Yeah. Mm-hmm. It's, it's, it's a very unfortunate thing what happens to a lot of people. Uh, it's not everybody can handle six. Mm-hmm. [00:20:00] Yes. I just see it as God weed out those people out of your life so that later on you just have the core people that actually can handle things. So on your Instagram, I've been watching Tara and her advocacy work and stuff like that for a long time, and I remember when you did some fire, you applied to be a, is it a firefighter?
TARA: Yeah. Um, I am, so I got my firefighter one's license and so I was a firefighter. Um, I mean, I still technically am certified, but my other health condition, I couldn't do nights, so it made it, so it was pretty difficult for me to do. I really liked doing it. It's just, it was just too much on my body. 
KERLY: Yeah.
Yeah. Take us through that, because when you paused, I was just like, who is Tara O'Neill? Like, oh my gosh, how did you do this? Because I was like. I remember when we, the firetruck came like to a fate and you got to like go inside the truck and stuff like that, and the [00:21:00] children were doing it. And then I asked one of the firefighters if I could try on their jacket and I was like, oh my God, it was so heavy, so, so heavy when you passed.
I was like, oh my gosh. She has to wear that, those heavy boots, that heavy jacket, and she should be able to carry another human being. Her weight. How is she doing this with s It's like, how is she doing this? 
TARA: Yeah, no, I mean, it was really difficult. I mean, luckily in most situations you're never carrying too much on your own.
You usually have someone to help, but the gear itself, like the, the boots were heavy and then like the jacket and pants, they weren't as heavy, but it was the SCBA, which is the air pack. That's what's really heavy because it's like an O2 tank on your back. That was the heaviest part, and that's what took the most, like the biggest toll on my body.
My pain source for one of my other health [00:22:00] conditions is on my neck and shoulders. And so it was just really affecting it. And then you would have to like get down and on the ground or get low and it was just pretty difficult for me. And so I just decided, um, once I was in school to step away from that.
KERLY: So how long did you do it for? 
TARA: Mm, I would say maybe. I was in EMT, like my license, I just, I'm be myself up for it. But I, my license for EMT just expired this past, like this year earlier. It was just too much to keep up and I had my state license, which was back in Iowa, so it didn't really make sense for me to have it here in Maine.
Um, and for five Runner probably did that for three years. 
KERLY: Wow. 
TARA: Yeah. 
KERLY: That's amazing.[00:23:00] 
LIZ: Can you tell us about how your life changed after being diagnosed? 
TARA: Um, yeah. I mean, it did change a lot. I mean, anywhere from like having to change my lifestyle in certain ways because of medications or just. To help manage it in general, but then also like having the right management made me be able to go to school again and graduate, and then is now helping me have a full-time job.
I mean, it's really changed my life and it's made me become a huge advocate and like I know how to set boundaries and like I don't let people treat me poorly. And so now, like if they treat me poorly, I just, I don't let them stay in my life because that's just too much stress on my body and it's not worth it.
The online support groups helped me a ton with that because it was hard at first, but it definitely [00:24:00] helped. 
LIZ: And when you say management, like what exactly did you put in place that helped with that? 
TARA: So before I was diagnosed, I was on sleeping medication like Modafinil, Ambien, all that different stuff that never worked.
But since I was on those before then I was able to get on Xyrem right away. Um, and so I was on Xyrem and some of the stimulants. On Xyrem, you can't eat two hours before bed and you can't drink alcohol. I mean, I was 22, so all my friends were going out still, and that's when I lost a lot of my friends is because I wasn't going out and they were, and they didn't wanna do anything else.
So I stopped drinking. I still don't drink to this day. And I was a huge bedtime snacker. Like I would eat every night before bed. And so not doing that was tough. But I lost 75 pounds in a year when I was first diagnosed, but then have gained it back since. So, [00:25:00] um, and then trial and error with different medications was also part of the management.
And then sleep hygiene is, has been huge too. 
KERLY: Hmm. Well done. 
LIZ: I'm in a similar boat to you where I, I started Xyrem when I was 23, so I also stopped drinking. And I'm curious if you can tell us more about how that affected your relationships. 'cause you said that, you know, a lot of friends didn't stick around during that period.
TARA: Yeah. Um, I mean, it was more so they just were still going out all the time. That's all they wanted to do. And I couldn't, and I would much rather get a good night's sleep. And, I mean, I don't miss how I felt after drinking anyways, so, um. But a lot of friends just didn't wanna do anything else. That's all they wanted to do.
So it was to the point where I just, it wasn't worth it to keep them in my life because wasn't healthy for me [00:26:00] and they weren't supporting what I needed to do. 
LIZ: And now you're older. Do you miss. Drinking at all or are you happy that I don't miss it one bit? I think it's quite an unexpected part of having narcolepsy and starting Xyrem.
It was definitely something I didn't expect, so yeah, it's always interesting to find out a bit more about that from other people too. 
TARA: Yeah. And now I'm on Lum Rice, so Ah, what is that? That's one nightly dose sodium oxalate. How 
KERLY: I'm the new one. 
TARA: Yeah. So the extended release, you find it, you find it better.
It's amazing not having to wake up in the middle of the night is, um, game changer. Like, 
LIZ: I don't 
TARA: know why they make it even an option for us, because it's like, that's not great for anybody, let alone someone else without a sleeping disorder. But I started to, on Xyrem, I was on it for, I think. Four, four [00:27:00] and a half years.
And I just, after like two years, I started to not think it worked very well. And my doctor, she was like, well, maybe it's just stress from school. And I was like, okay. And then, um, I graduated and I was like, still not working right. Seeing it's 
KERLY: no longer stressed from school. 
TARA: Yeah, and that's when, that was last May when I, right before it was gonna be announced that it was Lum Rise was gonna be coming out.
And I had been talking to friends who knew about it and knew about the clinical trials and stuff. And so I mentioned my doctor. I was like, I wanna get on this ASAP. She's like, well, let's schedule an appointment in three months and we'll talk. Then I was like, no, I'm not waiting three months. She didn't wanna start me on Wix either, though.
She wasn't very open to starting people on newer medications. But eventually I got her to prescribe it, and I've been on it for a year now. So. Actually, I [00:28:00] wake up feeling refreshed and um, well now I felt that way with Xyrem at first, but then I also struggled to wake up in the middle of the night to take the second dose, and so I was missing it and stuff like that.
And so it just started to not work as well in general. And so having the one nightly dose has been very helpful. 
KERLY: I can't wait until that comes to London because. 
TARA: Same. 
KERLY: I'm here with you. Like I need to just take it and go to bed, like having to wake up in the middle of the night. I find it messes me up because one of them doesn't work.
It's either I take the first one, it works, and when I wake up to take the second one, the second one doesn't work. Interesting. Or the first one works so well that I sleep past the alarm and then I miss the second one, and then I wake up and I've groggy, and then I'm going throughout the day, and then when I come back home, then I notice that I didn't take the night one and then think, oh, that's why the day was so bad.
That's why the day was so rough. 
LIZ: Yeah. I find with Zara that I [00:29:00] will still wake up like maybe two, three times a night. So I'll wake up and I just naturally wake up in time for my second dose. Now sometimes I'll wake up before and I'll usually wake up at like 5:00 AM 6:00 AM and then try and sleep a bit more, which is kind of annoying.
I can't even imagine what it would be like to sleep through the whole night. I know. Oh my God. It's like a dream. Yeah. 
TARA: And I actually, um, had a sleep study a couple months ago and I took loom rise mm-hmm. During that sleep study, and it was amazing what the results were. I had zero rem. What more? Yeah, that doesn't mean rare nightmares.
'cause that would be nice. Yeah. It's working and doing its job because people with narcolepsy are in REM all the time and 67% of my sleep was deep restorative sleep. 
KERLY: Wow. Two seven. Wow. Yeah. 
LIZ: Be so nice. 
KERLY: Honey, I'm so happy for you. 
TARA: That's [00:30:00] why I couldn't believe, like I think I sleep less on this, but it's definitely worth it.
I don't need as much sleep. I know a lot of people have been concerned, like I'm not sleeping that much on Loom Horizon. It's like, I don't think we're really supposed to sleep longer. As long as it's a deep restorative sleep, like that's what's really matters. You don't want too much of the deep restorative sleep either.
So it's like you have to find the happy medium. But yeah, I just thought it was so interesting how Head Zero rem on it. 
LIZ: Wow. So how much sleep do you actually get at night then, do you think? If it's slightly less? 
TARA: If I let myself sleep in, it's not necessarily on Lumez because you know how you can sleep in on Xyrem and stuff?
Yeah. And it runs out, but you're still sleeping. It's just not the quality of sleep. But I would say good quality sleep. I would say probably six to seven hours. Yeah. Pretty good. [00:31:00] 
KERLY: Oh, I would love, I would love that. 
TARA: I mean, I always, not always, but almost always wake up once in the middle of the night to go to the bathroom.
I mean, that's what happened when I was on Xyrem. 
KERLY: Everybody he doesn't know. Yeah. You know, Xyrem makes people go.
LIZ: I saw in your Instagram that you were on a Wiki 
TARA: advertisement. Yeah. That's pretty cool. Yeah. I'm a patient ambassador for them, and so I'm on their pamphlets and stuff. 
LIZ: Nice. How did you get involved with that and just advocacy in general 
TARA: for advocacy in general? It was. I started going to the support groups and then I started writing articles on the narcolepsy, sleep dot disorders, do something like that, but I started writing articles on that, and that helped a lot with advocacy.
And then meeting friends helped. [00:32:00] I, one of my friends that I met on support groups, who's one of my really good friends now, she was doing stuff with them and she connected me with them. And it started out just doing like feedback sessions where they would send me materials that they were thinking about sending out to like patients.
And I would review them and like let them know my thoughts. And then it turned out to me sharing my personal story on their website. Which my video is on there and I'm featured on their website too, like just on their page and I'm on their brochures and stuff. And then this past year they came here and did a photo shoot.
That's where like the pictures and all that stuff came from. I dunno how much I can say. But um, I've continued to do some more. Like I got to go to their office and share my rising voices of narcolepsy story. So that was really cool. What did that feel like getting 
LIZ: to share 
TARA: your story with all 
LIZ: those people?
TARA: I loved [00:33:00] the pharmaceutical company that manufactures wgs. I just loved them. They're so friendly and they love hearing about patient stories and patient experiences. They're great. It was cool. They had a lot of questions. They really appreciated me sharing my story. I did their lunch and learn for the month where they have an hour of lunch and learn, um, each month on different things.
And one of the people that was in the meeting, he's like, he trains people, like when they first get hired, the company. And he was asking me a bunch of these questions 'cause he was asking me about like. He trains, I think mainly like the people that are gonna go to the doctors and stuff. And so he was asking me about all these things that either I, what I experienced and what I wish I experienced.
And so that was pretty cool. And I guess he used it on a training call he had that day, which was really cool. I try to advocate as much as I can and I've got to do a [00:34:00] presentation on narcolepsy to the neuro residents at the hospital I was working at a while ago, and that was pretty cool too. 
LIZ: That's amazing and so important to raise awareness of what the condition actually is to people that are training to work in a similar field, and also to the pharmaceutical companies who are making all these medications like they need to know our actual lived experiences.
That's so cool. Yeah. Um, and you've got quite a big kind of social media presence as well. What inspired you to build that up over time? 
TARA: Um, I mean, I think just the fact of sharing my story and just, I don't want others to go 20 years without being diagnosed. I know when I first shared my story on Facebook, I had a couple people come to me and ask me about it because they thought they might have it, and some of them did, and so they wouldn't have gotten diagnosed if I didn't share my story.
I couldn't believe the amount of [00:35:00] people that commented on that post. It was like right around world narcolepsy day one year and it was just like I explained how like I had it for so many years and just like teachers I was friends with on Facebook and friends from when I was younger, they all like came and posted on it and all that stuff and it was pretty interesting.
LIZ: Wow, that's amazing. Especially as you went through your school years. With the wrong diagnosis being misunderstood, and then hopefully that really helps people to understand your situation a lot more. And can you tell us about your job now and why you wanted to go into that area? 
TARA: Yeah, so. I graduated from the electro Neurodiagnostic technology program last year, which is like EEG, sleep studies, EMGs.
So like EEGs, this is all electrodes on the head, but for like epilepsy. Um, and then EMGs is like nerve conduction studies. Um, [00:36:00] testing for like carpal tunnel or neuropathy, that type of stuff. And I was working as an EEG tech, but then. I was not treated very well and so I actually moved here before that job to Maine last November and they just couldn't take it anymore because they wouldn't accommodate me and they were just very rude.
So I quit and was job searching for a while and then I came across the job that I am at now. Um, I actually was gonna interview for like a receptionist position, but when I went in for my interview, they were looking at my resume and like my skills and all that stuff, and they. I thought I would EA better fit for this other position, and so I came back a couple days later and met with president, who is one of the sleep doctors, and I am a clinical sleep or sleep support clinical assistant.
And so I get to do stuff with sleep. I do the demos for the home sleep study test. And get the devices ready and [00:37:00] all that stuff and upload them to the patient's charts and just, I get to work and sleep and so it's really great. Um, that's so cool. Yeah. The going to school for what I did all, I think it was because of narcolepsy and I just became really interested in it.
But I love my job and it's a small area practice, so not a huge hospital or anything. And so they're very, um, understanding and friendly. What adjustments do you need at work? This job, like, I mean, they are very, very accommodating. I don't really need accommodations because anything that I do need, they just, they give it to me.
Like I needed a lot of different stuff for like, ergonomics wise on my computer, like on my desk, and they got me everything I needed. Or like are in the works of giving me everything I needed. But, um, one of the things I needed at my other job was I wanted to start at eight 30 [00:38:00] or work eight 30 to five instead of eight to four 30.
And they said no, they would not do that even though we don't really see patients until eight 30. So it didn't make sense and it's such tiny change that could. Everybody thought it was ridiculous. And so the job I'm at now, they actually told me your hours are eight 30 to five. I was like, sold. I didn't even ask and that's just what they told me my hours were.
So it was like, yeah, it was amazing. 
LIZ: And do you need to know in the day or do you make it through just with your medications? 
TARA: No, I make it through. Yeah. I don't really nap. I nap on the weekends unintentionally, but in weekends I'm more catching up on sleep. But during the day, I've found that I am so busy that it distracts me from the sleepiness.
So you vacation? Um, not a ton. I, it's like half of the day I am on my feet. 
Half 
LIZ: the day I am not. That is the dream. I hope for that for me one day that I don't need to [00:39:00] nap at lunchtime. Maybe. Maybe it's possible one day. Yeah. Oh,
my favorite question I like to ask at the end of every episode is if you could press a red button and completely get rid of narcolepsy from your life and never have experienced it, would you press it and why? It's hard to say 
TARA: because it's definitely made me who I am today. I would say yes and no, but for like multiple reasons I would say yes, because then I wouldn't be experiencing any of these symptoms.
But I would say no because it has made me who I am today. And I think a lot of the good qualities in me I would not have learned or had to like, adapt to if I didn't have this experience. And what kind of good qualities do you think it's given you? Definitely like independence and confidence, and [00:40:00] I would say just advocating for myself and what I need and then setting boundaries, stuff like that.
LIZ: Amazing. I think that's such a common theme for all of us that have narcolepsy, is that we have to listen to our bodies and we have to set boundaries because that is the only way that we can get by. And I think as women in particular, we're often raised to do everything for everybody else first, but actually this means that we have to put ourselves first a lot of the time.
Which is actually a really important thing to do. 
TARA: Yeah, I definitely agree. Like I've learned to put myself first, and a lot of people don't like it. They tell me I'm being selfish, and I'm like, maybe you're right. I am being selfish, but I'm okay with that. 'cause that's what I have.
LIZ: Quite a lot of that. Like 
TARA: I'm just learning to not care what other people think. I guess. Like I have to do what's best for me. But I know a lot of people, even in my family, they're like, you need to think about [00:41:00] others, or you need to put others first. And I'm like, no, I don't. Like I don't. You may think so, but I don't and I'm not going to.
I'm always gonna do what's best for me. Like my parents thought I was insane when I told them I was moving across the country because I don't know anybody here and I had to find all new doctors. But I honestly think if I would've lived in Maine my whole life, I would've gotten diagnosed sooner. The doctors here are amazing.
I was been diagnosed with two other big health conditions since I've lived here, and that's hasn't even been a year yet. These things I've had my whole life. 
KERLY: Wow. 
TARA: Mm-hmm. So it's made a real difference for you just getting better healthcare, better support, yeah. A lot of the doctors here are, I think they just have a lot more resources on this side of the country because there's a lot of research going on and they're just much more knowledgeable, I would say.
I don't know. I just feel like I didn't have the best, at least care for narcolepsy there [00:42:00] in Iowa. 
LIZ: It's a bit of a postcode lottery here as well in the UK on what support you get, what medication you can access, which is one of the reasons that it's so important to do a job like you do, raising awareness as much as you can so people can access better treatment.
Yeah. Well, thank you so much for sharing your story with us today. Thank you, Tara. Yeah, thanks for having, 
KERLY: is there anything that you want people to know or not know about narcolepsy? 
TARA: Um. I mean, I always have this saying that I like to say to other people with narcolepsy is, or just in general, that like people think that I can't do certain things because I have narcolepsy and I always say I may have to do things differently.
Or I may take longer to get things done, but I'm never gonna let narcolepsy stop me from doing what I want to do. And I think that's just important for everybody to hear because we do have a hard time thinking like, I'll [00:43:00] never be able to do this. Or having people tell you, you'll never be able to do this.
So I think that's important 
LIZ: and of that. Mm-hmm. Wise words. 
KERLY: Wise words, indeed. Thank you for coming on and sharing your story. It was really interesting and we wish you all the best in your new job, and as you continue to advocate and spread awareness and, um, we like to end with happy napping everyone.
Happy napping. Everyone 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 nonprofit group dedicated to improving the lives of people with sleep disorders through community [00:44:00] action. You can help grow our podcast and join our sleep disorder support group by visiting the website.
www.napsforlife.com. If you or someone you know has a sleep disorder and would like to share your story on narcolepsy navigators, please email us at narcolepsy navigators@gmail.com. You can also support us by donating at the websites. Happy napping everyone.