Okay. So, it is not like it is portrayed in the movies, and most people think that it is. A lot of times I get people looking at me and questioning whether I’m able to drive. The MVA does know about my condition. I’ve been evaluated and all that, and I’m able to drive with no restrictions because I’m responsible and I don’t drive if I’m sleepy. Obviously. But I just wish that people wouldn’t think that it’s the way that it is in the movies, and I wish people wouldn’t … Like, when I’m having a sleep attack and I say that I’m really tired, I wish people wouldn’t say stupid things like, “Oh, I wish I could nap all the time, too.” Because it’s like: No, no, no. You wish you could have the choice to take a nap. This is not the same thing. This is not me choosing to take a nap. This is, I’m going to take a nap whether I want to or not, no matter what it is that I’m doing or how inconvenient it is at this current point in time. It’s just obnoxious when people say things like that, that make it seem like this isn’t a debilitating condition, that it’s horrible to have. Because it is debilitating, and it sucks. And so, when people make light of it, as though it’s just, “Oh, you’re just a little sleepy,” that’s frustrating. I would say on the flip side of that, though, I have some people in my life who are very, very supportive, but when they say they’re tired then they’ll say things like, “But I’m sure I’m not as tired as you.” And I’m like, “It’s okay. You’re allowed to be tired, too. Just because I have narcolepsy doesn’t mean that I’m the only one who can feel tired. You know, I don’t have a monopoly on tired. Like, it’s not a contest. You can feel tired, too.” So, yeah. That’s kind of my thoughts on.

I think the worst thing that I’ve been told is they’re like, “Oh, well I must have narcolepsy too, and I know what it’s like to be as tired as you.” It’s a lot different when you have narcolepsy. I like to compare it to being hungover from a night of drinking, and it’s like that every day, even on the good days, so that people kind of get what I’m saying. It’s kind of hard to explain to people because it’s something invisible. They don’t necessarily see it, so they don’t even sometimes even think that it’s a real thing or that it’s really there. That’s what bothers me the most, and trying to explain that to someone is kind of hard who’s never experienced it or gone through it.

I guess I thought I had answered that one, but maybe I hit the wrong button. But I was talking about how people, kind of, think it’s a joke and they don’t understand it. And they think that if you have that if you have narcolepsy you’re just, it’s another excuse because you’re lazy. And that just makes me nuts. The other thing that I don’t like is, people will say to you when they know that you have it, narcolepsy, they’re like, “Well I’m tired all the time too, maybe I have it.” Or, “Well, I’m tired too, because I didn’t sleep well last night.” And for me it’s more than just not sleeping well one night or I’m not just tired, you know? And the other thing that I’m not a big fan of is when you see in the movies when they try to make fun of it, or they like to make it really exaggerated, like people with narcolepsy just fall down all the time. That’s just silly and it causes more misunderstanding about this condition because people think it’s just a joke. When it’s not really funny at all. And that’s pretty much my worst pet peeves, just the way people perceive you to be, and you’re not.

I wish people wouldn’t say that I’m lazy, or perceive people who have this as lazy or not wanting to have fun or constantly blowing off plans. I want to do fun things, but the overwhelming tiredness just takes over me. Also, I have this complex now, of thinking that I’m just a lazy person when actually I’ve had narcolepsy this whole time and now I’m trying to unlearn that in therapy, which is very difficult. I also hate when people compare their tiredness to the level I feel because it’s a whole different level and they could never understand this type of sleepiness. When people are like, “Oh, I’m so tired. Yeah, I get what you’re talking about.” It’s like, “No, you really don’t.”

I got tired hearing I’m burning at both ends. I was tired, and I didn’t know why I was going to sleep. Basically, people didn’t know I had a disease. They thought it was related to my lifestyle. I just cringed. I told them, “No, it’s not related to my lifestyle. It’s related to this disease of narcolepsy.”

I’d probably say that people don’t really identify with narcolepsy. They seem to associate there, I can sleep any time with normalcy. I’ve tried to explain to them that with me, I can’t… It prevents me from functioning and that it affects my self-esteem and the way I communicate.

I don’t know that I’ve had too much of an experience with that. I did have a really, really traumatic experience with a former supervisor who did accuse me of being on drugs because he said I fell asleep in a meeting. And he thought I was on opioids, and threatened to get me tested. And that was really, really traumatic and hurtful and not at all okay. And I did report that. But I don’t get called names or anything like that. I think one of the things that has been hurtful in the past is my extended family always will kind of make fun of me and laugh about how I’d sleep through the apocalypse if it came. And I’ve tried to explain to them, and they just kind of shrug it off and dismiss my diagnosis. So that’s been tough. But when it comes to name-calling, I don’t get that. I mean, maybe it’s because I wouldn’t tolerate it. But I’d say the main thing is the accusatory experiences I’ve had where I’ve been accused of suspicion of being under the influence, especially in the workplace, which is incredibly harmful, both career-wise and personally hurtful.

Usually it’s either lazy or, you know, introverted. Doesn’t want to leave the house. Can’t stay out very late. Doesn’t want to be social. Those are probably some of the main ones that really bother me.

I can’t stand it when people say that I don’t need these medications, that I need to just get a good night’s sleep, that I should go to bed earlier. People tell me that maybe I should try a different diet, maybe I need to add more exercise in my life, maybe I should get another opinion, a different doctor, that these doctors are just trying to pump me up with prescriptions, and I’m completely fine. It’s just somebody always has something to say, and they really don’t understand unless they’re in your shoes. And it really makes you mad when people say, “Well, I’m always tired. I don’t have narcolepsy. I think you just need to stop focusing on it.” It drives me nuts.

I think there’s a perception that people with narcolepsy are lazy and they choose to sleep. It’s the furthest from the truth. I am a very hard working and driven individual. Sometimes, I can’t do what my body wants me to do and that’s incredibly frustrating. The last thing that I would want to hear that makes me cringe is, “Oh, you get to take naps? Oh, that must be nice. I wish I had narcolepsy.” It takes all my energy not to want to smack the person. But I definitely think that more education is needed because many people don’t realize the struggles. I wish I didn’t have to take a nap. It’s a matter of I have to because if I don’t, my body will stop responding, almost like a computer that is having a glitch and you need to pull the plug for a couple of minutes and let it refresh, and then it’s fine. But I wish more people understood that.

First word that comes to mind is lazy, that I’ve made it up. Perception is, “Oh, I wish I had that condition so I could sleep all the time.” I wish people would be able to understand it a lot better, that it’s not a made-up thing, it really is a condition, that we aren’t lazy.

Well, narcolepsy is not a joke and it’s not like Deuce Bigalow, where I don’t fall down exactly. I don’t have cataplexy where I don’t have severe muscle loss, but when you’re exhausted all day, every day, even after you wake up, there’s clearly something wrong with you. And it’s not that you’re lazy because I know people with narcolepsy that are thin, that are not overweight. And I felt like this when I was a teenager and I played sports and I’d have to come home and take a two-hour nap when I was in 10th grade. So this is something that’s dogged me my whole life and now I have it under control. And I feel that my prior doctor thought I was just this woman who was complaining and I really feel there was some sexism around it also, because if this was a man complaining, would they have listened to him?

I wish that people would not make narcolepsy the butt of the joke, or just something that happens in TV shows. It happens in person with other people. It would be nice if people didn’t act like narcolepsy means that I fall asleep just randomly, standing up, or in my seat. Those are really common perceptions that other people have.

I hate when people find out that I have narcolepsy and they’re like, “I don’t think so because you aren’t just falling asleep all day long nonstop. You would fall asleep without even thinking about it.” Or throughout the day, like having a conversation and just fall asleep quickly, so I think that’s kind of irritating.

A lot of the opposition that I receive actually comes from my extended family and my step-sisters, people that really are not in my day-to-day life that make comments that I’m lazy, that I’ve become antisocial, and I don’t care about family events. I wish that they could see and that they did understand that I have limitations, and sometimes just the stress of being around them because of what they have said and done in the past makes it progressively difficult to put myself in those situations whenever I know that stress exacerbates my symptoms. And even with medication, just from being around them, I am overcome with symptoms from the narcolepsy and cataplexy, and I become incapacitated for several hours, if not a full day. I’m not lazy. I am quite an overachiever. I hold multiple degrees. I am a medical professional. I do not make this up. I’m not lazy.

A frustrating thing about narcolepsy is people think, “Oh, you just fall asleep anywhere, that’s so great that you get all this sleep time and naps and you must never feel tired. Oh, you get a good night’s sleep, because you’re so tired during the day.” And of course, all of this is a fallacy because somebody with narcolepsy, even when you nap, it’s not usually restful. At night insomnia, constant exhaustion, regardless of what you do. And it’s hard to make people understand that kind of tiredness. And I think that is a big misconception that makes it difficult when talking to people about narcolepsy.