00:00 My disorder causes me to fall asleep without warning several times during the day.
00:04 I will fall asleep wherever I can, even if that's sitting up.
00:08 I've had episodes while out at nightclubs and people have often thought that I was passed out drunk.
00:14 What is probably the most inconvenient place that I've had an episode?
00:17 I don't know about inconvenient.
00:19 Oh, granny's funeral.
00:21 [laughs]
00:22 There have been situations where people are like, "Wake her up."
00:25 It serves no purpose because I'm going to pass out.
00:27 What just happened?
00:28 The justice.
00:30 A typical morning for me, three o'clock is when my first alarm goes off.
00:34 I'll get ready to go to the gym.
00:35 I'll head to the gym at around four, get back to the apartment, take a shower,
00:41 and then go back to sleep for like my morning nap.
00:44 Narcolepsy type 1 is a neurological disorder where my brain can't regulate my sleep cycles.
00:50 This will cause me to fall asleep without warning.
00:52 Narcolepsy affects your sleep at night.
00:56 Most people don't know that you will be experiencing, some people call it insomnia.
00:59 I say it's fragmented sleep, which means I wake up every hour on the hour.
01:04 I always tell people it's not waking up that's the issue, it's staying up that's the problem.
01:09 Narcolepsy is an everyday thing, so it comes with the territory no matter what I do.
01:14 There's no off button, there's no like not having it for a day.
01:18 I don't know if I'm going to be up, you know, come an hour or so.
01:22 There were indicators of my narcolepsy throughout my childhood.
01:26 Earliest that I can think about having an episode is probably like second grade.
01:30 I remember being in class and trying to like pop rubber bands on my wrist.
01:33 I'm like trying to eat things, drink, do anything to keep myself awake
01:37 and I physically could not stay awake no matter what I did.
01:41 And I was like, I don't think this is normal.
01:44 I didn't have an official diagnosis until I was 18.
01:51 So what was it like having a sister with narcolepsy?
01:54 Well, first of all, we didn't know you had narcolepsy.
01:56 He was just sleepy and liked to take naps and didn't think anything was wrong with it.
02:01 It kind of just like a personality trait.
02:04 Like Justice is just sleeping.
02:06 Justice is just sleeping.
02:07 Justice, she's taking a nap.
02:08 Look, there she's sleeping again.
02:10 How did it feel to finally realize what was going on?
02:14 Having the diagnosis just allowed me some like confirmation
02:18 as in like, OK, now I have an explanation.
02:21 Because it's hard to tell people you have narcolepsy,
02:24 but you don't have any evidence to support it.
02:27 People are like, don't really believe you.
02:30 Sleep episodes can happen literally anywhere.
02:32 You name it, I've probably fallen asleep there.
02:34 They can last from five minutes, 20 minutes, just depending.
02:40 I'm never out longer than like 25 minutes usually.
02:43 I really try my best to organize my day so episodes won't occur.
02:48 If I schedule a nap, I know I won't have an episode.
02:51 But there are certain situations where your schedule doesn't just permit you to have to do that.
02:57 What is probably the most inconvenient place that I've had an episode in front of you where like?
03:01 Either you had to like step in.
03:03 Inconvenient?
03:04 I don't know about inconvenient.
03:06 Oh, Granny's funeral.
03:08 I don't know why my dad would play my grandmother's funeral in the middle of like my nap.
03:18 If you don't know, I have narcolepsy.
03:20 I just look like an a-hole.
03:22 So those type of situations and those type of places are always kind of uncomfortable for me
03:27 just because I understand what the perception is.
03:29 Granny understood my situation, you know what I mean?
03:32 With narcolepsy, they're always naturally attached to some level of embarrassment that comes with it.
03:37 And especially when people negatively point it out or draw negative attention towards it.
03:43 Being made sometimes as a spectacle in a negative way,
03:46 it's definitely an embarrassment because again, this is something I have zero control over.
03:51 We are going to prime nap time here pretty soon.
03:53 So if we go to the park, you're probably gonna have to drive.
03:56 I might, you know, have an episode.
03:58 While you got me, I'll take over.
04:02 Yeah, such is life.
04:03 So it is what it is.
04:13 The number one question I get when I tell people I have narcolepsy is they bring up driving.
04:18 Driving naturally, even without narcolepsy, can be a dangerous thing, you know what I mean?
04:22 I make sure just to be very aware and cognizant about putting myself in positions
04:26 where I'm not putting myself in danger.
04:28 I have a risk of episodes happening every day.
04:32 If an episode is going to occur, you can't fight an episode over.
04:36 There have been situations where people are like, "Wake her up."
04:38 It serves no purpose because I'm going to pass out.
04:41 You kind of just have to let it happen, and then I'm going to come to you on my own.
04:44 You know how they put babies in cars when they want them to fall asleep?
04:48 Yeah, that, yeah, same thing for me, for sure.
04:51 What just happened to Justice?
04:54 Um, she's, uh, I guess you'd call it episode, and she went to sleep.
05:01 Sometimes I'm able to wake her up, and she'll wake up.
05:06 Sometimes she'll sleep through it.
05:07 It depends on Justice and her body sometimes.
05:11 Usually what I tell people is don't wake her up.
05:14 Let her, let her be.
05:15 It's not a big deal.
05:16 It's such a light sleep, so I can hear what's going on around me.
05:21 When I was younger, I used to think I had superpowers because I could, like,
05:25 play back conversations that I was asleep for.
05:28 It's the trippiest thing.
05:29 Other people may wonder what's going on.
05:32 It's funny to see people sleeping out in public, so sometimes that brings some attention.
05:38 So I just make sure just to keep her safe.
05:41 Just making sure people respect her and that her episode is not a spectacle, right?
05:46 It's just, it's just normal.
05:47 She's just doing what she does.
05:49 There is a level of protection that somebody with a sleeping disorder,
05:53 specifically narcolepsy, relies on their friends and family to be able to advocate for them.
05:58 Because I'm in a situation where I cannot protect myself.
06:02 I'm extremely vulnerable right now, and I may need you to be my voice of reason
06:08 in a situation where I'm not able to be that person for myself.
06:10 I've been so fortunate in my life to be surrounded by people
06:14 who are very supportive, protective, and understanding.
06:17 Oh, I'm tired.
06:18 Right after it, I usually just, you know, act like nothing happened.
06:22 That's kind of the best thing about having friends and family who understand the disorder.
06:26 Literally, I'll wake up and we'll just continue, like, without missing a beat.
06:31 I understand narcolepsy is something not a lot of people understand.
06:37 Not a lot of people know about.
06:39 I have narcolepsy.
06:40 Of course I'm going to take a nap every day.
06:41 And that I could use my experience to educate, but also to advocate.
06:46 And that's what I've gained from posting on TikTok more about my narcolepsy and sharing
06:51 my feedback and understanding and stories.
06:54 I don't take offense when people ask questions.
06:57 That doesn't offend me.
06:58 But then if someone would comment and they'd be like, "You're faking it."
07:01 I'd be like, "I wish. I wish I was faking it."
07:05 Somebody being like, "You're just tired. You're XYZ."
07:08 Like, I guess that's your opinion.
07:10 Also, not the reality.
07:12 But if you already have in your mind that you're not open to listening and hearing and
07:16 understanding, you're not going to.
07:18 So it's just more so not entertaining people who just come on your page with nonsense.
07:23 Do I find narcolepsy frustrating to live with?
07:31 Yes and no.
07:32 Yes, in the sense of, of course, it's frustrating.
07:34 Like, you have a neurological disorder where you can't stay awake, you know.
07:37 But no, in the sense of lifestyle without perspective.
07:42 There are challenging days where I'm like, "This day was shot.
07:45 My disorder was whooping my butt today."
07:48 But understanding as a young person that you still can live a functional life, that you still
07:53 can achieve the things you want to achieve.
07:56 I think that is the biggest understanding that you aren't like chained in by your disorder.
08:01 And if the worst thing in my life is that I have to allocate a few extra naps and be
08:05 a little more cognizant about when I drive, I'll take that.
08:08 100%.
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