Jacquie & IH: The Reality Beyond Just ‘Tired’

00:00 - Kerly (Host) Hi everyone, this is Narcolepsy Navigators and I'm Keri, your host. 00:06 - Liz (Co-host) And I'm Liz, your co-host for today, and we both have narcolepsy type 1. 00:10 - Kerly (Host) And today we're here with Jackie. Jackie has idiopathic hypersomnia. She's from Texas in the United States. The topic is life with diagnosis and surviving a stressful work environment. Hi, jackie, welcome. 00:28 - Jacquie (Guest) Hi guys, it's so nice to be here with you and to talk with you. How was your day? Oh, it's still going. It's actually midday here in the US, so it's 2.30 right now. I know it's late for you guys, not too bad 7.30 here, so we're doing all right. 00:45 - Liz (Co-host) Liz, how was your day? My day was all right. I'm a speech and language therapist and I had some sessions today, which is really good. But I went to have my lunchtime nap and I couldn't fall asleep, which was so frustrating. I was lying there for 40 minutes and just could not sleep. Oh no, yeah, so it meant I really need my lunchtime nap because it helps me to feel more alert in the afternoon, and I was okay, but I just felt a bit zoned out and had to rely on caffeine. I had a very nice nap when I finally got home at six and you needed needed it by then. 01:23 Yeah, I fell asleep on the bed with my phone in my hand, like still on fully dressed. 01:29 - Kerly (Host) By that time there was no problem falling asleep. 01:31 - Liz (Co-host) Yeah, straight out. 01:34 - Kerly (Host) How was your day? Yeah, it was okay. My book is coming out in 72 hours. 01:39 - Jacquie (Guest) Mind. 01:39 - Kerly (Host) Archetypsy Coloring Book and Dream Journal. I had to give it to KDP for them to check it. I had to make some revisions and it just took so much longer than I thought it was a learning process. 01:51 It was just very tedious. I thought this would be like half an hour just do the revisions, bang it out and then do editing the rest of the day. Oh no, it didn't turn out like that at all, but I'm happy it's done now and it's just for them to approve it. If it's approved, then on Sunday it's going to be live in every country that Amazon exists. 02:10 - Jacquie (Guest) Congratulations. That's a big deal. Yeah, I'm so excited to see it go live, especially because I love coloring. That's how I de-stress. I might have to snag one. 02:21 - Kerly (Host) Jackie can. Can you introduce yourself? Tell us where you're from, what state you're residing in, how old are you, if you would like to share that, and what year were you diagnosed? My name is Jackie. 02:32 - Jacquie (Guest) I'm 25 right now. I live in Texas in the United States currently, so I'm in south of the United States. I actually live in south Texas. I was diagnosed this year in October for the first time. The diagnosis process took about 10 years. I have had suspicion of some kind of sleep disorder since I was about 15. It just took a really long time to find someone that would listen to me and get me testing. I just got diagnosed in October, so this is a very new run of medications and learning how to process. 03:05 This is the first time in my life that I've actually been able to say not everybody feels like I feel and not everybody is tired like I'm tired. It's a very new stretch of time. I haven't even had my diagnosis for a year yet. You're a real newbie yeah, I'm a real newbie in this community, but I'm trying my best. I really felt so alone when I was getting my diagnosis that I'm trying to find as many people as I can who are working on getting their diagnosis or have their diagnosis here, especially at the university. I have my Instagram page trying to get out there and tell people if you feel tired all the time that's not normal. 03:38 - Kerly (Host) That's good. It's good that you're trying to advocate for even at uni, so soon after you've started. It's good, yeah, for sure. 03:47 - Liz (Co-host) And have you managed to find other people at uni who have a similar condition to you? 03:52 - Jacquie (Guest) So at my university I haven't yet. So far I'm working. The biggest issue is that I'm really busy. I'm trying to get my doctoral degree right now and I work in a laboratory and that takes a lot of time. I work eight-hour days on a good day, so usually I'll be here until about nine or 10 at night. 04:08 Finding people is hard sometimes, but on my Instagram page I have found people and I've had people who talk to me about I have these symptoms, what should I do? And most of the time it's just talking to people and being like it's okay, you're not alone. It's hard and it sucks, but this is what we have and this is what we're dealing with, especially with idiopathic hypersomnia, because there is no known cause, which means there's no way to fix it, and that can be super frustrating. For me in the past 10 months it's been the most frustrating, just officially knowing there is nothing to do because we don't know what the issue is. 04:43 Here in the university, I'm mostly trying to get community outreach going, and so that just takes time to get started. This is going to help me. This podcast I've been telling my boss knows about it and the university knows, and so I'll be able to send them the episode and then that will help me to be able to say this works like talking with people works. It's good to have this community because it helps people feel not so alone. There are a lot of people at the university who have narcolepsy and things like that. We have resources for them. I think there's a little bit of shyness about talking about it because it is medical condition. Wes is weird about talking about medical conditions, but I'm working on it. 05:19 - Kerly (Host) That's really good and it's nice that your boss and Alex Roos is supportive. 05:27 - Jacquie (Guest) He's super supportive. I'm super glad that he's on my side. 05:31 - Liz (Co-host) That's amazing, and can I just ask when you said that there's a lot of people in the university who have narcolepsy and there's resources for them, do you know what kind of resources they are? 05:42 - Jacquie (Guest) The biggest thing is we have on campus. We have a medical center here. So the university that I go to is Texas A&M University. It's one of the biggest in the state. Because of that, we have an on-campus medical center just for students. You can see doctors, you can get medications, you can get prescriptions. It's really nice. 05:59 In the US we don't have socialized health care, so health care is not free, and so for me when I was a student, that was a big deal because I didn't have health care and couldn't afford medication For things like narcolepsy. The medications can be very expensive and they can come up really quickly where you need them and you just can't afford them. What I ended up doing a lot as a college student where, if you've ever been to college, you're broke, like you just don't have a lot of money. You can get prescriptions through the doctors at the medical resource center and get them prescribed at the pharmacy. You can actually charge the pharmacy and the doctors all the money you would have to pay to see them and get the prescription to your student account so you can pay it through your tuition. What helps? When I was a college student, I didn't have a lot of money that helped me spread out those medications so that I can afford them over time. 06:51 That's a really big deal for people who have narcolepsy or things like that. They just can't afford the medication that helps them afford them while they're here. And then narcolepsy specific resources. They have areas like quiet areas where you can go and sleep or nap, or we have dark rooms, so there's a lot of study areas so you can go out and you can just. Essentially, they built the campus around student needs and so you can actually just go close a room, turn the lights off and sleep if you need to. This is super friendly to disabilities and things like that. We have a whole disability services here. Those things are always being met, so it's really awesome. We have a lot of resources here for people. It's mostly just getting people to understand, to reach out and ask for those resources. They're always there as long as you tell them. It's a pretty awesome university. I'm very proud of it. 07:40 - Kerly (Host) I want to go and I'm finished. 07:41 - Jacquie (Guest) Yeah, it's a great university, especially in the US. It's pretty great. 07:47 - Kerly (Host) I haven't heard of anywhere that's that accommodating, very good stuff. 07:51 - Liz (Co-host) Different from my university experience, which is the complete opposite. I think the British universities could definitely take a leaf out of that book. 08:00 - Jacquie (Guest) Yeah, it's pretty awesome. Granted, it is one of the biggest universities, so they have had time and a lot of money to evolve because of that, but they definitely listen to what their students need most of the time and it's really nice and I definitely have taken advantage of some of those the naps and stuff like that. The nap work is really nice. Are there any strategies? 08:21 - Liz (Co-host) that help you get through day to day with your condition. 08:25 - Jacquie (Guest) Yeah, I drink a lot of caffeine. I was taking medication for a little while. I tried the first FDA approved medication for idiopathic hypersomnia in the US. It's called Zywave. It's GHB based, but it's a really strong medication. But unfortunately it didn't work for me, which was really devastating because it is the only one in the US that is FDA approved and so at the time it felt like a big blow of this is the only one and it didn't work for me. 08:53 I mostly I just try to keep moving. If I sit down for too long, I start to like zone out. I lose focus. A lot is the biggest issue, and that's when I can tell I'm going to start to fall asleep. And I drink a lot of caffeine, which most people in my field will say. That's not abnormal, because most scientists do drink pretty heavily when it comes to coffee. I don't know any scientists that don't have a coffee pot nearby. 09:16 Luckily, my job also keeps me on my feet and so I'm always moving, even when I'm writing. I'll take breaks where I just stand up and walk around. I also like to listen to. I listen to a lot of podcasts, y'all's included. I listen to your podcasts. I listen to music. 09:30 I keep my brain as engaged as I can to keep from falling asleep, but unfortunately there are still days where I have I call them my crash days. I'm just so tired that I just can't do anything else and I usually have no idea what day that's going to hit. Sometimes it's randomly in the middle of the week and sometimes it's, luckily, on the weekend. On those days I will sleep for 18 to 20 hours, but I used to have those multiple times a week. I have now been able to get those down to about once a week, but that's just part of the condition is I'm going to be tired and I have those days where I am unbearably tired or there's nothing I can do. I just have to try and hope that I can get it on a day where I have nothing important to do. 10:13 - Liz (Co-host) I think that's the thing with narcolepsy and idiopathic hypersomnia. It varies so much day to day. So you can have a consistent medication routine, you can have a consistent sleep routine. But one day you can wake up and you're fine and everything goes fairly well. And then another day you wake up and the medication or the caffeine doesn't touch the surface and you're struggling to get through. It's just so unpredictable. And I think that's what a lot of people don't really realize is that you can have a plan and strategies in place, but some days you can just be absolutely flawed and not really know why. 10:50 - Jacquie (Guest) Yeah, it's funny you mentioned that I actually had. On one of my first videos that I ever posted on Instagram, somebody commented and said your medication must be working because you didn't say you retired. And I remember thinking yeah, because this was a really good day. You have not seen the days where I fell asleep, sitting up I was explaining to my partner, who is a doctor of audiology, so he has his own levels of tiredness and stuff like that. 11:18 One of the symptoms of idiopathic hypersomnia is sleep inertia, so when I wake up, I cannot stay awake. It's so hard and that's the biggest struggle for me. I have alarms set for two hours that go off every five minutes for two hours. Wow, and they still don't get me up on time. I'm still late almost every morning. I try my best, but it doesn't always go well. When I told them we were talking about how to overcome that and I said it's like having chronic pain. It's not something to overcome, it's something to cope with, to figure out how to live with, because it's not going to go away, it's not going to get better, it's going to be there and it's something I'm going to continue to have an issue with, and it's the same with the bad days, like there's going to continuously be bad days, Just like we have really great days, and I think that can be so easy. To feel super defeated with these conditions is because you'll have those really good days and sometimes they will be followed by the worst days. 12:17 - Kerly (Host) I think that's also why it's frustrating if you go out and you're having a good day and someone says oh, you look really good today, or I see you're out, or this type of thing. Or the person say, no, I see your medication is working today, or whatever. 12:32 It's just like why do you have to say these things to me? Why do you have to comment? You could have just said hi Kelly, how are you? Hi Jackie, how are you? Hi Liz, how are you? You have to say these other extra things, you know, because, yes, the day is going good right now, but that doesn't mean that tomorrow is going to be like today. Tomorrow could be a shit show and tomorrow could be, you know, you'd be able to get out of bed, yeah exactly. 12:58 - Jacquie (Guest) I think that's also. It's hard for some people who don't have this kind of condition to understand that you have no control over the good and the bad days. They forget that it is also frustrating for us to have those days. We also want to have good days every day. I would love to go to work every day and have a great day every day, but that is also not up to me. 13:17 I feel just as bad when I have a bad day. I'm just as frustrated as everybody around me. I've been really lucky with the people that I work with. My boss is very understanding and has worked, has tried to understand as well as he can my condition and has tried to understand what I'm going through, and he's worked with me through the ups and downs of taking new medications and all of the things. And my partner has been really helpful, and I'm very lucky because that's not always the case for a lot of people. So I get the frustrations for sure, but I think that learning how to cope and finding coping mechanisms is the best way to get through it and how do you deal with the frustration day to day? 13:58 - Liz (Co-host) I have times where I'm extremely frustrated, like today when I couldn't nap and I had to go straight back into my job and I just felt so annoyed the situation. It's hard because you can't really vent that to the people around you, because they just don't get it. If I said, oh, I couldn't nap to my colleague they'd be like that's good, You're clearly not tired. Then it's so hard for people to understand. What are your ways that you found helpful to deal with those frustrations day to day? 14:31 - Jacquie (Guest) day to day. So the main way that I have found my way of dealing with frustration for the most part is to show myself that I'm still good without this part of me. Essentially and what I mean by that is I'm one of those people that my work matters a lot to me. I worked really hard to get to this point and I had to overcome a lot of things to get to this point, and so, because of that, being a scientist means a lot to me. Earlier this week I had a really bad day of sleep, inertia, and I just could not get out of bed. I woke up at about 11, which is super late got ready quickly and I stumbled into work. I had decided, essentially to make this better, to balance things out, that I was pretty much going to punish myself and make myself stay at work until nine or 10 o'clock to do as much work as I could, because that felt like I was evening the playing field for my colleagues because I was late. 15:20 That day I realized at about seven o'clock when I was talking to my partner and I was like I just feel like I'm failing and I'm not doing well enough. Partner, and I was like I just feel like I'm failing and I'm not doing well enough. He asked me if you were not the one who had this condition, and he compared me to my younger brother. I have a nine-year-old brother. If you were not the one feeling this way, but your nine-year-old brother was feeling this way, would you say those things to him? And I said no, of course not. I would never make him feel this way. I would never want him to feel this way. And he said okay, then you should not let yourself feel this way. You're not being fair to yourself, you're not being courteous to your own feelings. And he was like you have this condition that you are not taking into consideration at all when you're treating yourself this way. 16:03 I think the best way to deal with the frustration is to feel it for what it is. Take it into consideration, be angry, be sad, Cry, do whatever you gotta do, feel what you're gonna feel and then recognize that's okay, it is what it is. You have a condition and it's going to be frustrating. You can't beat yourself up over it and you also can't punish yourself for it, because it's not gonna fix it and it's also not going to make you feel better to punish yourself because of something you can't control, and so I actually ended up leaving work at that point and I was like I'll finish it tomorrow If you wouldn't say something that you're saying to yourself to a child or to your younger sibling don't treat yourself that way in that moment. I think that's a good way to handle those moments of beating yourself down because of your condition. 16:50 - Kerly (Host) Yeah, definitely, you have to learn to give yourself grace. 16:54 - Jacquie (Guest) And. 16:54 - Kerly (Host) I like what your partner said to you about using your brother as an example, because it's interesting, as human beings, how we would say nice things to other people but say such detrimental things to ourselves. Yeah for sure, learn to break that pattern, because it never helps us, it just stresses us, and once we're stressed, it means your symptoms get worse. 17:16 - Jacquie (Guest) so yeah, for sure. 17:18 - Kerly (Host) And that's not saying you're not going to feel those things I like what you said about crying and just feel it, just let it, let it run over you, yeah holding it in is also bad. 17:28 - Jacquie (Guest) So don't do that. Just feel and be angry and be sad and then move on from that as best you can, whatever that may be, and if that's just going to bed and trying again tomorrow, then that's also fine. 17:39 - Liz (Co-host) I can totally relate to what you guys about feeling like you're letting people down. It's. It's a frustrating feeling when you can't do something yourself, and I know sometimes I have to choose between oh, I can finish the day in my job, I can get everything done there, but then I won't be able to come home and make dinner for me and my partner. It's a juggling act and you're going to drop one of the balls at some point and that means you're going to let someone down along the way In my job definitely being a scientist is like a team sport, which I don't think a lot of people are aware of. 18:14 - Jacquie (Guest) I don't work alone. I have six other people that I work with, even though we're not working on the same things we're working on different things alongside each other. It matters to me that they see me as reliable, because when they need help with something and they come to me, I want them to think that I can help them and that they can trust me, that I can be there and help them and be punctual and useful when they need me. I know that was a big thing. When I came in late that day I was like this makes me look unreliable, this makes me look like they can't trust me, and that really bothered me. And then there's also a lot with my partner and things like that. Like I feel like this condition sometimes makes it very hard to show up and be present, because when I get home, I just want to go to bed. 18:58 I'm in a field that is heavily male dominated. That poses its own set of hurdles, because, as a woman in this field, I have to prove that I belong here and that I deserve to be here, that I'm a good scientist and I have good data. I don't want that to be tampered with because of something like I fell asleep or I ran late because of this condition, and so that's also why I wanted to open up more of talking about conditions like this, because I don't want it to be something I have to be secretive about. I want it to be something where, yes, I have this condition and yes, I am also still an awesome scientist. I still produced good data, and I know other scientists who have similar conditions who still produce good data, and so that's why I think so. 19:41 - Kerly (Host) Jackie, what inspired you? To go into science? 19:44 - Jacquie (Guest) Yeah, I always wanted to go into science. I've always been a nerd. I had a big family and I always loved animals. My whole family did. We always had pets and dogs and all that. So I actually want to be a veterinarian, and this university in Texas was the only university in the state that had a vet school. When I was eight years old, I found that out and I told my mom I'm going to go to school there. So I did. 20:08 I came to school here and then I shadowed a veterinarian. After about a day I was like this is terrible, I hate it here. So I was like I'm going to have to find something else, because being a veterinarian is not good for me. And so then I thought, maybe medical school, maybe that's what I'll do. And so I shadowed doctors and I thought that I really liked it there. But I realized that I always cared more about the science behind what was going on, more so than the medicine, which doesn't make a very good doctor. 20:39 And so in my third year of college I actually was trying to fill my schedule because I didn't get into some classes that I wanted, and so I was panicking, and so I was trying to find stuff to just throw into my schedule and I actually accidentally signed up to be in the lab that I'm in right now. Usually you're supposed to fill out a bunch of papers and get permission to go into a research lab. I just signed up. I don't know how I got in here, but I did. The professor still let me come. My current boss was like, okay, I don't know how you got in here, but I guess, welcome. I started working and the person who taught me Dr Nguyen she's justa fantastic human being. I realized, dang, I really like this, this is really fun. I started learning more about it. I actually work on ticks I work on tick-borne diseases right now and I started working on it more and more and I decided maybe I'll do it again next semester. At that time I was still thinking maybe medical school, maybe I'll go to physician assistant school, but this is really cool, I enjoy it. 21:38 And then my last year of college, I got rejected. My application didn't go through for PA school. I was devastated and I was like, oh, what am I going to do? I don't want to wait another year. And one of his current students said you should apply for a PhD. I was like, okay, and so that's what I did. Now I'm here. I've always really loved science and I just bounced between what do I want to do? And it's always been science directed. When I got in this lab, it was a complete accident, but I was allowed in. Now I tell my boss you're stuck with me. I came here by accident and you just can't get rid of me. Now I've been in this lab for almost four years. It's going to be about eight years before I leave. You're going to be stuck with me for almost a decade. Complete accident, but science has always been my focus, for sure. 22:27 - Liz (Co-host) That's amazing that you made it there. It's clearly fate that you ended up there. 22:32 - Jacquie (Guest) That's amazing that you made it there. It's clearly fate that you ended up there. That's what he says too. I tell him all the time. I don't know if it was unlucky on his part and lucky on mine or not, but it was. I think it was awesome that it worked out that way, one of my favorite stories, for sure. 22:43 - Liz (Co-host) And how has having IH affected your career aspirations, and have you achieved more or less than you thought you could with that? 22:53 - Jacquie (Guest) condition. So I don't think my condition has affected my achievements. Luckily because I was in the lab already, I had a head start in my PhD because I skipped the first year of training, essentially because I was already here. The only thing that I have realized is my intentions with my PhD is that I really want to be a professor, so I want to stay in academia and I would love to follow in my boss's footsteps. He is a fantastic professor and he's also a fantastic scientist. He's a great researcher and a great teacher. I want to do that too. 23:27 He gets here at seven in the morning and is the last one to leave. He comes to the lab on his way out at eight o'clock in the evening, sometimes even later, and he comes in on weekends. It's a big time commitment. I have been very honest with myself about my sleep inertia troubles and about my troubles with staying awake during certain things and the sleeping during the day. I have fallen asleep at my desk. 23:52 I have also talked with him about those concerns and the fear that comes with being how will this affect my career type of thing, and his big advice was your condition will only affect your career if you let it, and so you can't get rid of the condition. So you have to learn how to have the career and cope with your condition at the same time. Essentially, he told me my career is going to be at a completely different time in science and education than his career is at right now. Science is constantly changing and so is education. By the time I get into the level of education and science that he's at right now, everything will be completely different. Me trying to build my career after his is not irrelevant, because I'm building it with him as my model, but it's going to be based off of him but built towards the future as it's coming into view right now. 24:48 I'm just trying to build that with my IH as I'm learning to cope with it. It's still pretty scary. I'm still learning how to cope. I'm really learning about some of the symptoms that I'm dealing with. I'm really hoping that by that point maybe there will be a medication or at least a known cause. But if that doesn't come, then I'll learn to cope with what I have currently and that's all that I can do and just hope for the best. Learning every day is the goal right now? 25:17 - Liz (Co-host) And is there a symptom that you are surprised the most by? Because you said you're still learning about your condition and you're quite early on in your journey? 25:27 - Jacquie (Guest) Yeah, so actually ironically, because it's the symptom I struggle the most with the sleep inertia was the biggest shock to me. I didn't know that could be a symptom of something, especially because when I was growing up and I would struggle to wake up in the morning, especially as a teenager, my mom would yell at me in the mornings and be like you're lazy, get out of bed, you're being lazy, you're going to make us late, that kind of thing. And it was always one of those oh, you'll grow out of it. And then I got into college and the same thing of oh, you're just tired because you're a college student, you'll grow out of it. 25:59 When I got past college and I was still struggling, I was like there's no way every single other person in the world has to set this many alarms just to wake up on time. I was like this is crazy. I cannot believe that every other person has to have 10 alarms to wake up. When I found out that was a symptom, I was like, oh my God, that's crazy. I just thought I was broken. Only a little bit am I broken? Other people have the same thing. 26:26 - Kerly (Host) It's interesting because I didn't even know there was a word for it sleep and leisure. Someone we interviewed on the podcast mentioned it and I was like sleep and leisure what the hell is that? And I was like, oh my God, I've been struggling with this all the time. I say this to people. This is the reason why it takes so long to start the day. Waking up is so hard in the mornings. It's just so much energy out of you just to start. 26:52 - Jacquie (Guest) Yeah, it reminds me of the spoon analogy and I'm just like sleep inertia is me laying on top of all of my spoons. I physically move any of the spoons at all in order to start the day. And yeah, sleep inertia for sure, because I had never heard that word before. I had actually never even heard of idiopathic hypersomnia until I had started doing sleep testing, so that was a new thing for me. Until they were like, oh, you might have this or narcolepsy. I was like what is that? Once I got my diagnosis, my science brain was like okay, now we have to do all the reading and learn about this. 27:28 That is how that works. And so I read and unfortunately the research world on idiopathic hypersomnia and narcolepsy is really small. There's not a lot of money in it, there's not a lot of research on it and a lot of that also there's not a lot of research on women who have it, which is crazy, because women are usually the ones who are diagnosed, especially with a neoplasmic hypersomnia, and so because of that there really isn't a lot known about it. So there wasn't a lot to learn, unfortunately, and even now there's still not a lot to know about it, but I'm hopeful that will change. 28:01 - Kerly (Host) What do you think we need to do to get them to do more research? 28:05 - Jacquie (Guest) Honestly talk about it as much as possible and talk about it to everybody, especially local representatives In the US. Calling your representatives and talking to your mayor, governor and whoever sits on the panels in your state can hold some kind of weight for you. Those people are the ones that ultimately hold the money, because that's where the money comes from in the government for the most part. We need to talk about it is the biggest thing because for a lot of diseases, what gets people's attention is the media. When it goes into the media, that's what gets the public's attention and that's what gets the government's attention, because the government is part of the public. Getting people to understand this does not affect us. It affects a small part of the population, but it affects a lot of people. Yes, it's a small percentage, but when you add that percentage up, when you actually look at the number of individual people that it affects, that's a big number of people and a big effect on their lives. Getting it out into the public and starting the conversation of we need to understand how this works so that we can fix it. The more people that have it, the more people are going to eventually get it, as you get involved with the genetics of it. The more people that have children who have the conditions, the more possibilities those children are also going to have the condition. The biggest thing you can do to to get more money into research is to just talk about it. Get as many people as to talk about. My family member has this condition and it affects their lives and we need to be looking into it, researching it and understanding it, not just in men. We need to be understanding how it works in women too. There needs to be equal representation of women and men from all different races throughout these research studies. Now they just started pushing for equal representation of women in research, which is crazy, I know, yay, go USA, but they finally did it. They did it. 29:58 The more we have the conversations, the more attention that it gets, and the more attention that it gets, the more people will start to pay attention. It might be something that our kids might see, and that's even the studies that are happening right now build the foundation for the studies that are going to fix the problem. tyuiThey need money, and so that's the other thing. Finding organizations that donate money to those studies so, like the Hypersomnia Foundation, is one of them. There's quite a few of them. The Hypersomnia Foundation is one of the bigger ones that I know of. They have a really great Instagram page. There's a lot of them that have their own social media accounts and they spread awareness. There's also conferences worldwide where talk about idiopathic hypersomnia and narcolepsy and the current science are the best way to get money to get science going, because unfortunately, science is what runs on money. 30:52 - Liz (Co-host) What led you to put yourself out there on social media? 30:55 - Jacquie (Guest) Honestly, mostly just because of when I was going through the process of diagnosis, I realized how lonely it felt. I would talk to my friends when I was growing up. I kept being told I'm so tired all the time. I just feel so tired. The doctors would tell me oh, you're a teenager, you'll grow out of it, or you're depressed. I remember when I was 15, the doctor said you're clinically depressed. I was put on a heavy antidepressant and I was still tired. They told me you'll grow out of it. And I didn't grow out of it. For a long time I felt super lonely. I felt like nobody else understands what this is like and nobody maybe nobody else feels this way. Eventually I'm talking about it all together I thought something wrong with me or something is broken in my brain. 31:41 Once I got into science. I didn't want people to think I was incompetent or unable, and I also have a hearing disability. There was that level of maybe she can't do this as a woman. I didn't want people to think I can't do something, so I stopped talking about it. At some point I went back and visited my high school my first year as a PhD student. I gave a talk at my high school. 32:03 The area that I grew up in is not the richest area. There's a lot of poverty there. I was thinking about the kids there, and when I was a kid, there were so many people that told me that I couldn't do something because of my family, because of my background, financial situations. At some point I got super tired of people telling me I couldn't do things. I couldn't be a scientist because of my hearing problem. I couldn't go to college because of my financial situation. I couldn't be a good scientist because of my IH. I can't be an academician because of my IH. 32:36 And I was like screw that, I'm going to make an Instagram page and I'm going to show people that not only can I do this well, but they can also do this, and that we can all do this. It's hard and it sucks sometimes and there are days where I go home and cry and that's okay. It's really rough sometimes, but there are also some days where it's awesome and really fun and good. Other people can do it too. You can come from any background, any condition, any kind of disability, and you can do the things that you want to do because you want to do them, and that's all that it takes. If you want to do it, then you can, and that's it my instagram page was. I wanted to show people. Just because you told me I couldn't, I'm gonna show you I can yeah, I'm stubborn that way. 33:21 I had someone tell me that's the best way to get a phd is to just prove someone wrong, and I think they're right. Yeah, I'm stubborn that way. I had someone tell me that's the best way to get a PhD is to just prove someone wrong and I think they're right. 33:26 - Kerly (Host) Yeah, I'm stubborn that way. You just have to tell me, especially if it's something I want to do. Oh yeah, you can't do it. I'm like okay, yeah, watch and see. 33:36 - Jacquie (Guest) When I'm successful, I want you to look me in my eye. 33:41 - Liz (Co-host) It's a good way to light a fire in the belly. 33:44 - Jacquie (Guest) It is, and I hope that it works. Even if it only gets to one person and helps give them the little bit of, I can do that too. That's all that I'm hopeful for. If it helps one person feel better about themselves, that's all that I care about. 33:57 - Liz (Co-host) I think representation on social media is important to put yourself out there. If people can see, someone with my condition can achieve these things. It's not all sunshine and roses. They still have days that are really rough. That's okay and normal. 34:11 - Jacquie (Guest) Yeah, and I think social media is turning now away from only sunshine and roses to more representation. Now and I love that I'm trying to join that side of social media, especially like our conditions are super rare to begin with, trying to talk about them more will help people feel comfortable talking about them, which is part of the issue too. People don't talk about them. They have them. Even if they don't have them, they don't feel comfortable asking questions, which is an issue, because you don't ask questions, you won't learn about it. I would rather have somebody ask a question on my Instagram page or Facebook about the condition, so that I can educate them or have a conversation with me, than just not ask questions and not learn anything. I think it benefits for sure. I like this new version of social media. It's definitely a nicer version. 34:57 - Liz (Co-host) I think knowledge is power. The more people around us that know about our health conditions, the more understanding and accepting they can be, particularly in work settings. If people know that there are some days that are going to be hard for you but you're still going to do your best, you're not going to play the disability card to get out of things. If you do have a rough day, they know that you are trying really hard and that you can achieve it on another day, but maybe that day is just a bit harder for you. 35:26 - Jacquie (Guest) Definitely those conversations help to build that understanding and, like you said, knowledge is power. What you don't understand is something you can't empathize with. The more you know about it, the more you can try to understand. And I think the work settings will change over time. I hope I've been very lucky with my boss, but I know friends who are not so lucky and so those kinds of things I hope will change over time. But those conversations are what force that change? This kind of stuff like what you guys are doing are the kind of things that help cause those conversations Definitely. 35:58 - Liz (Co-host) Advocating for yourself is so important and just getting the message out there. And is there anything in particular? If there was just one thing you wanted people to know about IH, what would you want them to know? I? 36:09 - Jacquie (Guest) think the biggest misconception is that it's only tired. There's also brain fog. I get memory loss sometimes. I zone out a lot. I've seen some people who get body aches. Other people have migraines with it. I actually get aura migraines. It is understudied and the cause is unknown. There's a lot of symptoms that are misunderstood or misconnected, and so I think the most common misconception is like oh, you're just tired and that's easy to cope with. I just want people to imagine you just got home from a long day and you're ready to go to bed. And imagine feeling that way all the time, and add that, on top of your daily life tasks that you have to do, just having compassion for your fellow human beings is the best thing to do all the way around. But I think that's the best thing I want people to know is it's not just tired. There's a lot more on top of that, and I think that goes with all sleep conditions. It's not just tired, it's more than that. 37:06 - Kerly (Host) Absolutely. I tend not to use the word tired, because people think that they know what tired is. People think, oh yeah, I felt tiredness. So I usually say exhaustion or sleepy instead to have a different word, because everyone thinks they know what tired is. Oh, I feel tired too. 37:25 - Liz (Co-host) And I hate when they say this like my friend the other day. 37:27 - Kerly (Host) It was ramadan, she had to get up to break the fast. She only slept four hours. She came to class and she's I'm so tired. I only slept four hours. And I just looked at her and I was thinking okay, I'm sad that you're going through this and this is ramadan, but this is my life. This is my life every day. I'm sleeping only four hours. Let her say what she had to say and then I said to her welcome to my life. And then she looks at me and she's wrecked. I'm just like your life folded apart because you had four hours sleep. Try doing this for months, so true. 37:58 - Liz (Co-host) I had a friend the other day who I love, bless her. We were away on the weekend and I had to go for a nap. When I came back from the nap she was like I love naps. And I was like good for you. Nobody loves naps. I have to do them every day, so I don't love them, but yeah. 38:18 - Jacquie (Guest) Yes, I usually just don't respond, I'm just like, yay, I'm sorry that you feel tired Moving on yeah. 38:26 - Liz (Co-host) It's so hard to empathize in that moment because other people feel tiredness, but they can't feel the same amount of tiredness that we feel. So it's oh, you're tired. Like it's hard not to sound indignant. 38:38 - Jacquie (Guest) What they're tired feels like. Could I handle it? 38:42 - Liz (Co-host) it's probably how we feel as soon as we've woken up after a decent night's sleep we've had maybe a good six hours and we wake up and we're like that's the top of our game. But for someone else that's when they're tired. 38:55 - Kerly (Host) So basically, our best day is when they're like oh my God, I'm dying. Best day that's when we're out and ready to do an activity. That's why, when they say to me they're tired, I'm just thinking oh, please, keep this time to yourself. 39:08 - Liz (Co-host) One of the things that annoys me, which people do all the time, and I know it's just a general phrase, but if I yawn and then someone else yawns and they're like, oh, you're making me yawn, and I'm like, oh, it's so annoying. My family do that all the time. I yawn literally hundreds of times a day. I have narcolepsy. If you don't want to yawn, don't be around me now's a probably good time for my my favorite question. 39:34 I like to ask at the end if you could get rid of IH by pressing a red button. Would you press it, and why? 39:43 - Jacquie (Guest) I don't know honestly at this point. I realize I've lived with the condition since I was a teenager. I really don't remember what it feels like to not have it. From this point, I have built my life based on my experiences with the condition. Even though I didn't know that I had it, I coped with my life the way that it was. Now I'm aware of it and I handle things a little differently. I pay more attention to what's going on in my body, what my brain is doing. But I still think that I did things and handled things the way that I did with this condition. I don't think that things would have changed or the way that I handled things would have been different had I not had it. 40:18 My upbringing was super non-conventional, I guess, is the way you could say that, and so there was lots of struggles with like housing inconsistencies and my parents had some addiction problems. Those things I had to handle with lots of adaptation. I always thought that I was tired because of those things. Now I recognize probably not, but it was another way for me to explain that exhaustion. Would it maybe make my life now a little easier? Possibly, if I can get rid of it from this point forward. 40:49 Maybe my Virgo brain tells me that I'm afraid of the future. I'm a little bit scared of what's going to happen with this condition and how it affects me and the things that I struggle with. But I also think that this condition gives me that extra boost to show other people that you can be a badass and still have this condition. You can be a good scientist, you can be a good person, you can do cool things, work really hard, work in a high stress environment and still be a fully functional person. And it doesn't. It affects you and it changes things and you have to cope with it, but it doesn't take away from those successes, and so I think that this condition has given me adversity. It's just one more thing to add, so I feel like it just gives me another fire to overcome. 41:41 - Liz (Co-host) Well said, thanks for sharing. 41:43 - Kerly (Host) And it's natural and it's okay to worry about the future, especially when it comes to conditions like narcolepsy and even more so ih, because it doesn't have a known cause. The people I have met with narcolepsy who are older tend to say this as well that they worry about getting older with it. They never really worried much when they were younger. They they are concerned about like, how does this look when you're 70? How does this look when you're 80? If no cure comes and you're still having to deal with this if you don't have kids, if you have kids, is someone going to want to dump you in a home? Who's going to take care of you? Are you going to be able to be taken care of properly Because you're going to be sleeping all the time and zoned out and having brain fog and no one's going to even care about you. 42:33 - Liz (Co-host) It's daunting, like you've got to almost live your best life now because it doesn't look pretty at the end yeah my hope is that not necessarily a cure will come in, but the thing that gives me hope, and that my partner regularly reminds me of, is that every year medication gets better. There's always new options coming out. There's always new areas for research. Hopefully On the horizon there might be something that can work for us, and that's the thing that gets me through the really hard days. You never know, carolee, when we're 80 years old we might have more energy than we have now. 43:14 - Kerly (Host) So I do know someone who's in her late 70s the one person I know with narcolepsy in her late 70s and she lived most of her life without being diagnosed and she had lots of different jobs and she started very young as a child with the symptoms. It was rough, but her name's Glennis Shout out to glennis. She's such an inspiration. She's managed it so well even though she got it. She got diagnosed late and now like probably like family don't want to accept that that she had it, instead of embracing the fact that she got diagnosed. They're like she's always been sleepy when you've lived so much of your life having to balance it on your own without medication and things like that. So then now she doesn't feel she needs to be fully medicated and stuff now because her children are all raised, she's just got grown kids now. 44:02 So she just she listens to her body and plans her day around her activities and that's how she lives her life. Because a lot of the other medications you might be on as you get older could cause other problems like affect your heart and stuff like that, and you don't want to mess with those sort of things when you get older. So it's almost better for her not to be medicated and to just keep balancing it her own way. But she does take medication for the cataplexy because that can be dangerous falling and stuff like that, especially when you're older and you live alone yeah, the science scape is always changing in here. 44:33 - Jacquie (Guest) They rotate what subjects are the most important, at least in the us. I haven't looked super heavily into international funding because I'm a baby scientist and they won't fund me, but I have looked at the government funding in the us. They rotate topics. It's not what is big that year. They try not to stay in the same areas. Make it fair for everybody. They fund sleep research and stuff like that and hopefully they'll recircle those and come back. The science is always changing and medicines are getting better and so, who knows, maybe in 10 years time a lot happens. Science changes very quickly. Even in the past year I've seen new revelations in my field alone that were huge, and so things change so fast. It could take 10 years and we'll see huge changes. So I'm excited to see it and hopefully it'll be all good stuff. 45:23 - Kerly (Host) Yeah, that's what we pray for. Thank you, jackie, for coming on and speaking to us. It was really lovely to speak to you and hear your story and all the things that you're doing in the science world. I'm so proud of you and all you've accomplished already, on all the things that you are going to accomplish in the future. Watch this space, people. 45:44 - Jacquie (Guest) Thank you so much for having me. This was so much fun. You guys are lovely. I love your podcast and what you guys are doing. Can't wait to see how far it goes and how many people you guys help and talk to. 45:55 - Liz (Co-host) Thank you so much, Jackie. Happy nothing, everyone Happy nothing.