I Can't Stop Falling Asleep | BORN DIFFERENT
28-YEAR-OLD Justice lives with narcolepsy type 1, a rare neurological condition that causes her to fall asleep "without warning" several times per day. The condition means Justice is unable to regulate her sleep-wake cycles, so she experiences fragmented sleep during the night and "sleep episodes" can happen at any time during her waking day. Whilst Justice does her best to schedule naps in an attempt to prevent episodes, she regularly falls asleep in public - something that she admits comes with "some level of embarrassment." She has been mistaken for being "passed out drunk" after falling asleep in nightclubs and even experienced an episode during her grandmother's funeral. Justice is not oblivious to how that might look to people who don't know she has narcolepsy - something that does make her feel "extremely vulnerable." Fortunately, Justice is surrounded by supportive friends and family, including her sister Ava. Having grown up with Justice, Ava is used to protecting her sister when she does have an episode in public: "I just make sure to keep her safe, making sure people respect her and that her episode is not a spectacle." With this support to fall back on Justice is adamant that whilst her condition can be frustrating "life is all about perspective" - and now, by advocating online, she is determined to show other young people living with narcolepsy that "you aren't chained in by your disorder. You still can live a functional life, you still can achieve the things that you want to achieve."
Follow Justice:
https://www.tiktok.com/@justicecollins11
https://www.instagram.com/pray_4_justicee
https://www.twitter.com/Pray_4_Justicee
Follow Justice:
https://www.tiktok.com/@justicecollins11
https://www.instagram.com/pray_4_justicee
https://www.twitter.com/Pray_4_Justicee
Transcript
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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