Advocacy Series: S1E6 Meet the Woman Who Created the World's First IH Nonprofit

It took Michelle Chadwick 20 years to get diagnosed with idiopathic hypersomnia (IH)  and when she finally did, she found almost nothing online to help her make sense of it. So she built it herself.

In this Advocacy Series episode, hosts Kerly and Christine talk with Michelle Chadwick, founder of Hypersomnias Australia and creator of the world's first Global Idiopathic Hypersomnia Awareness Week, about the two-decade road to diagnosis, the funding gap no government will close, the medical record that still says the wrong diagnosis, and the honest truth about what advocacy actually costs.

About The Guest: 

Michelle Chadwick is a global advocate for people living with sleep disorders, with both a personal and professional interest in the space. She lives with idiopathic hypersomnia (IH), and in 2013 founded Hypersomnias Australia — the world's first nonprofit dedicated to IH — alongside the Global Idiopathic Hypersomnia Awareness Week and Australia's IH Patient Registry. She chairs Sleep Disorders Australia, sits on the Australian Sleep Association's Disorders of Central Hypersomnolence Working Group and the Global Sleep Consortium Expert Working Group, and has spoken at government hearings worldwide to advocate for better research, diagnosis, and care.

00:00

Welcome to the Advocacy Series

01:08

Meet Michelle Chadwick from Brisbane, Australia

03:47

Michelle's bio: founder of Hypersomnias Australia

07:34

What is IH, and Michelle's first symptoms at age 11

10:44

The 20-year road to diagnosis

12:05

Getting diagnosed, but getting no support

15:01

Building lifestyle strategies from scratch

18:57

The meeting that led to founding Hypersomnias Australia

20:26

Obstacles, stigma, and "I might not do it again"

23:29

IH vs. narcolepsy, explained simply

27:17

The government funding gap no one talks about

30:59

Workplace disclosure: why so many can't work in their trained field

37:37

Getting researchers to finally take IH seriously

40:30

Michelle's honest advice for newly diagnosed advocates

44:20

Morning routine hacks for sleep inertia

47:30

The Red Button Question

If this episode resonated with you, share it with someone who needs to hear it — especially anyone newly diagnosed and searching for the support that didn't exist for Michelle either. Subscribe, leave a review, and join our community. Happy napping, everyone.

Transcript

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Michelle Chadwick 27_08_2025

Advocacy Series Launch

[00:00:00] 

[00:00:00] Speaker: Welcome to the brand-new advocacy series on the Narcolepsy Navigators Podcast, where lived experience meets powerful storytelling, and every voice makes a difference. I'm your host, Kerly. In this special series, we're shining a light on the change makers, advocates, and the everyday heroes who are breaking the silence in their field.

[00:00:28] Speaker: Each episode will take you behind the scenes of what it really means to fight for awareness, equality, and understanding in healthcare, education, employment, and beyond. From patients and parents to professionals and policy shapers, we'll hear how they are navigating systems, building communities, and driving change because when we speak up, things shift.

[00:00:48] Speaker: When we come together, we move mountains. Get ready to be inspired, informed, and empowered. This is advocacy in action. This is Narcolepsy Navigators [00:01:00] Podcast.

Meet the Hosts and Guest

[00:01:08] Kerly (2): Hi everyone. Welcome to Narcolepsy Navigators. I'm Kerly, your host.

[00:01:12] Kerly (2): I have narcolepsy type 1. 

[00:01:15] Christine: I'm Christine, your co-host, and I also have type 1. 

[00:01:18] Kerly (2): And today we're here with Michelle Chadwick from Brisbane, Australia, and she has IH. Welcome to her story. Hi, Michelle. How are you? 

[00:01:28] Michelle: Hi. I'm good. How are you? 

[00:01:30] Kerly (2): Yeah, I'm okay. 

Weekend Check In and Symptom Triggers

[00:01:31] Kerly (2): How was your weekend? 

[00:01:34] Michelle: Weekend was good but quiet. It 

[00:01:37] Kerly (2): was quite.

[00:01:38] Kerly (2): Yeah, sometimes you need that extra rest. And Christine, how was your weekend? 

[00:01:43] Christine: Yeah, it wasn't bad. I was actually at a festival on Saturday. 

[00:01:47] Kerly (2): Oh, 

[00:01:47] Christine: nice. Just part of the day, so got my nap and stuff first. But it was, like, dance music, so it really kept me awake. 

[00:01:55] Kerly (2): Oh. So 

[00:01:56] Christine: It was actually really good.

[00:01:57] Kerly (2): That's good. 

[00:01:59] Christine: What about [00:02:00] you? 

[00:02:01] Kerly (2): I can't remember the weekend now. I do remember Monday though. I just finished hairdressing school, so I went to do some training at a salon. My mom was my sort of guinea pig, and it was, like, the worst narcolepsy day ever. Oh, no. It was like 28, 29 degrees, and then the narcolepsy just took hold.

[00:02:24] Kerly (2): We were there from 11:30. , I got home at 9:00 o'clock. So I probably stood for seven hours and, but I had to keep sitting probably every half an hour. It was just so bad. I'd do two lines, and then I would be like, I needed to stop and nap. It was absolutely ridiculous.

[00:02:43] Kerly (2): And I had two Red Bulls and still my... I was like, I didn't know what was happening, but my body was just like, "Nope. Not today."

[00:02:52] Christine: . Do you find that, Michelle, with the heat makes your- iH worse 

[00:02:57] Michelle: yeah. Anything that is [00:03:00] either too - hot or too cold, any extreme can make the managing symptoms more difficult.

[00:03:06] Christine: Yeah. It's it's difficult to get that balance, 'cause I know I was excited for summer and the heat, and then i- it's now a bit too much. But I know when I, when winter comes, it's gonna be very dark- and cold, which is gonna make me sleepy in a different way. So yeah, no winning. 

[00:03:26] Kerly (2): Yeah. 

[00:03:27] Michelle: Yeah. 

[00:03:27] Kerly (2): Me too. 

[00:03:29] Michelle: The cold can- ... certainly make it difficult to get out of bed. That's for sure.

[00:03:33] Michelle: Yeah. 

[00:03:33] Christine: Definitely. And 

[00:03:33] Michelle: it's been a bit cold here recently, so yeah, I'm looking forward to warmer weather. 

[00:03:39] Kerly (2): Oh, yeah, 'cause I I forgot, when we're having our summer, you're having your winter.

[00:03:43] Kerly (2): So you're in your winter now. Yeah. Okay. 

Michelle Chadwick Bio

[00:03:47] Kerly (2): So hi everyone. I'm going to read Michelle's bio Michelle Chadwick is a global advocate for people living with sleep disorders. Her interest in sleep disorders is personal and professional. She lives with idiopathic [00:04:00] hypersomnia, a debilitating and often misunderstood neurological sleep disorder.

[00:04:04] Kerly (2): Michelle's lived experience has shaped her passion, longstanding commitment to improving the outcomes for people with central disorders of hypersomnolence. Driven by her desire to address the lack of awareness, support, and research for IH, Michelle founded Hypersomnias Australia in 2013, the world's first nonprofit dedicated to idiopathic hypersomnia.

[00:04:31] Kerly (2): In the same year, she created the Global Idiopathic Hypersomnia Awareness Week. She also established the Idiopathic Hypersomnia Hypersomnia Patient Registry to address the critical lack of data on the condition in Australia's michelle has a strong interest in health promotion, particularly in relation to reducing stigma, improving diagnosis, and [00:05:00] advocating for access to better care and treatments.

[00:05:03] Kerly (2): She regularly collaborates with researchers and institutions to ensure the patient voice is integrated into the study design, ethics, and dissemination. Michelle co-authored a 10-year analysis of Australia's IH patient registry, and has participated in international expert working groups to develop consensus on patient-reported outcomes and measures.

[00:05:35] Kerly (2): Through founding the Living with IH peer support communities across multiple regions, including USA, UK, Europe, Canada, and Australia's and New Zealand, and the Living with Narcolepsy group in Australia, Michelle has helped reduce the isolation and empower people through education, connection, and [00:06:00] advocacy.

[00:06:01] Kerly (2): A, chair of Sleep Disorders Australia and a member of Australian Sleep Association Disorders of Central Hypersomnolence Working Group and the Global Sleep Consortium Expert Working Group. She remains committed to contributing to meaningful research that improves our understanding of these complex conditions.

[00:06:27] Kerly (2): Michelle has spoken at numerous events and government hearings to raise awareness and improve the outcomes for those living with sleep disorders, particularly central disorders of hypersomnias.

[00:06:41] Kerly (2): She has also been featured in publications which you will 

[00:06:45] Kerly (2): see in the show notes, so you can check them out. And welcome to her story. Welcome, Michelle. 

[00:06:52] Michelle: Thank you for having me. 

[00:06:54] Kerly (2): It's so nice to see you again. 

How Kerly Met Michelle

[00:06:56] Kerly (2): A little backstory. I went to Australia last year. I was gifted [00:07:00] a chance to go to Australia by a good friend of mine, Clarence Yapp, and his husband Steve.

[00:07:05] Kerly (2): And while I was there, I said, I must take the opportunity to meet up with s- some people in the central disorder of hypersomnia space and Michelle was was willing to come out and meet me, and we had a nice lunch and discussion about, of, ways to go forward and and impacts that we could be making here in the UK, and the importance of collaboration and not sticking to yourself when it comes to The awareness for like our disorders and stuff.

[00:07:31] Kerly (2): There's power in togetherness. 

What Is IH and Early Symptoms

[00:07:34] Kerly (2): Yeah, so yeah, so Michelle please in your own words for people who don't know or understand what is IH, and when were you diagnosed? 

[00:07:46] Michelle: I first noted symptoms when I was 11, and I remember that quite clearly because it was the year that I went into high school.

[00:07:55] Michelle: So I have found and this seems to be the case with a lot of [00:08:00] people with IH, when responsibilities change we tend to notice when the symptoms started. So going into high school was for me. It can be transitioning from, say, teenagers to adulthood, where you're required to be more responsible as an adult.

[00:08:18] Michelle: Or when you have been a young adult and you've managed to get by, but you're now starting a real career, so you've left university or further education and now you're really starting to have to take on responsibilities. I find that the symptoms that people may have been overlooking or have been able to get by on have now become way too challenging, and that was the case for me when I entered into high school.

[00:08:47] Michelle: I found waking up in the morning extremely difficult to a point where m- my brother could try and wake me for school and it would be pointless. I would lash out at him be quite [00:09:00] irritable. He wouldn't know what to do, so he would leave me there, and quite often I would just keep sleeping, and then find myself in all sorts of trouble when my mom would come home from work and find that I hadn't turned up to school that day.

[00:09:12] Michelle: Getting to school could be a challenge as well and quite often I would just get off the bus and go to the local library and just sleep the rest of the day there. So I would... Yeah. Oof. Because I knew once I got to school it would be falling asleep in class and getting into trouble, and so IH is basically for most people an extreme difficulty turning sleep off.

[00:09:37] Michelle: We don't ever seem to feel fully awake, and that was certainly the case for me. So I struggled throughout my teenage years and into adulthood. It took 20 years before I finally reached a diagnosis. 

[00:09:53] Kerly (2): Wow, that's a long time. So all, all this time when you were having these symptoms when you were [00:10:00] at home when your brother was waking you up and when you felt like you had to go to the library instead of school 'cause that seemed like a safer place to be to have a nap, what was your mom thinking or your dad?

[00:10:10] Michelle: That's a good question and I often wonder if my mom actually had IH or has IH- ... because she also slept a lot. But sleep wasn't allowed in my house. Of course. I, and I think that's partly because she had to soldier on, so she just expected me to. 

[00:10:29] Michelle: She didn't know that she had anything wrong with her.

[00:10:32] Michelle: ... So she was like I struggle to wake up, but I do." 

"

[00:10:36] Michelle: And I struggle to get to work, but I do." So I guess she just expected me to be the same I suppose. 

The Long Road to Diagnosis

[00:10:44] Kerly (2): So what was the breaking point that led you to actually get d- getting diagnosed? 

[00:10:50] Michelle: Good question. As soon as I was in control of my own health, like as soon as I became an adult which was young, I left home at 17 I [00:11:00] just kept knocking on doors and it, I just kept doing that getting pushed from one specialist to another o- one GP to another and not getting anywhere.

[00:11:11] Michelle: Lots of misdiagnoses, lots of unnecessary medications that were thrown at me. None of them made any difference, and it wasn't until I actually moved to another state in Australia where I joined a whole new team of medical professionals and GPs and whatnot that they started to ask different questions and I was referred to a sleep specialist for the first time.

[00:11:38] Michelle: I didn't even know sleep specialists were a thing. 

[00:11:40] Michelle: Yeah. And it was never anything that was ever brought up in the conversation prior to that. So for 20 years- ... there was no conversation that revolved around sleep. Because I guess if there had have been amongst themselves, they would've referred me to a sleep specialist- 'cause I'm sure they knew they existed, but that, no, unfortunately wasn't the case. 

[00:11:59] Kerly (2): [00:12:00] Wow. 

Treatment Gaps and No Support

[00:12:05] Kerly (2): So when after you got diagnosed, do you feel that they explained to you properly what IH was and how things were gonna go forward? Did they offer you medication? 

[00:12:12] Michelle: I was offered medication, yes, and I have a sleep specialist that is quite knowledgeable.

[00:12:18] Michelle: So although I didn't feel vindicated or anything like that with regards to the diagnosis, I always knew there was something wrong. So it wasn't like, "Oh, great. Finally an answer for this." 

[00:12:31] Michelle: It was like, "Okay I've got medication. The doctor's explained things to me rather well."

[00:12:37] Michelle: I'll just go along and live my life. Well- ... the medication d- didn't do anywhere near as well as even he suggested it might. He did give me realistic expectations for it. But it certainly didn't transform my life. And when I went back to him, that was it. There wasn't any alternatives.

[00:12:58] Michelle: There wasn't any advice [00:13:00] about what lifestyle changes may help or no support groups. And the more I looked online for anything to do with IH that may help or answer some of these questions, the less I found. And , I was actually quite taken aback by that. It made me wonder not if IH was real, obviously it was.

[00:13:22] Michelle: A doctor had diagnosed it, and I had the symptoms, but it was not seen on the internet. There was... Yeah, and that really confused me. I thought "This can't be right. Where do people go for information and support?" 

[00:13:40] Kerly (2): Yeah, I can just imagine that. Oh, yeah. You've got a diagnosis and everything now, and now you would like to, read up on other people's lives, how are they doing with it, how, maybe someone who has had it much longer than you or something like that, and then ending up with a sort of dead end.

[00:13:55] Kerly (2): That would be quite frustrating. 

[00:13:58] Michelle: Yeah. There wasn't even anything [00:14:00] on the internet. The only thing that you could find on the internet back then was research papers, for sure. Some of them we could access. Others were behind paywalls. But the most striking thing was that they were old.

[00:14:13] Michelle: There was clearly nothing happening in the space that was current. 

[00:14:17] Kerly (2): Ah. 

[00:14:19] Michelle: But it was literally just research papers. There was no mention of IH on any website that you can see it now. Even the National Sleep Health Foundation in the US had no mention of IH then. Wow. 

[00:14:33] Kerly (2): Wow. 

[00:14:34] Christine: That's terrible. 

[00:14:36] Michelle: It was completely invisible.

[00:14:38] Michelle: You didn't see it. 

[00:14:39] Christine: Suppose it's such a struggle to get diagnosed, and then once you're diagnosed, you're like, "Oh, amazing. I have a diagnosis." But then , there's nearly another step to finding the right medication. And I remember even for narcolepsy, I thought, "Wow now I've got access to medication.

[00:14:55] Christine: This is gonna make such a big difference." But it's just not the cure-all that [00:15:00] you think it's gonna be. 

Lifestyle Strategies That Help

[00:15:01] Christine: What would you say in terms of lifestyle changes? , What did you discover yourself, then, in terms of coping and managing IH? 

[00:15:09] Michelle: Because there was no information and no support and whatever I realized that I needed to- create what wasn't there.

[00:15:21] Michelle: So that then required a lot of learning. So it's taken a long time to get to where I am now. So I have made lifestyle changes that do help. They certainly don't resolve symptoms, but they do help me get the most , out of my medication, and they do help add some quality to the wakefulness that I do have.

[00:15:44] Michelle: But it's taken such a long time to learn what I know, and all of the hit and miss and mistakes along the way, various diets I've tried and yeah. But what I have found helps is keeping a low-carb diet. [00:16:00] So carbs and sugar in general , can cause me to have an afternoon crash.

[00:16:04] Michelle: So if I avoid the carbs and the sugar, then hopefully can avoid that crash or minimize the severity of it, and that's pretty much what the lifestyle changes for me does, is just minimize the severity of the impact that ... the symptoms are likely to have. But that's the problem with IH. You never know what one day is going to be like from the next.

[00:16:29] Michelle: So it's very hard to make these changes or to continue on a life- new lifestyle path when you don't know how you're going to be from one minute to the next, much less one day to the next. So it, yeah. Obviously things like exercise, yep, that works. But what happens when you're too exhausted or too tired or physically asleep- to exercise. So yeah, on, on a good day, I may be able to do some exercise. And on most days I [00:17:00] may be able to prepare more healthier meals for myself, but- I'm like anyone else with IH narcolepsy. Most often than not, I reach for foods that I know aren't great for me. 

[00:17:13] Michelle: And then I end up having to suffer the consequences. Yeah. Unfortunately, there are some things I can do to help, but I can't always do them. 

[00:17:22] Christine: Yeah. It requires energy in the first place to actually manage it, which is if you get too far down and too exhausted and, or, like physically asleep, then you can't implement all this.

[00:17:34] Christine: And, it's okay people being like, "Oh, try yoga," and "Do all this." And it's like, no, but we rarely be on an equal footing every day. The stability, it could be stable for a few days and you're like, "Oh, great. These symptoms are, , a bit more predictable." But it only takes an external factor like a, a cold or being up all night- Yeah

[00:17:56] Christine: or something random. I find that difficult, [00:18:00] just the randomness of it. But no I think basically, if you knew then what you know now, like it's, I think that's shows the importance of advocacy, sharing even little bits.

[00:18:12] Christine: Even the thing about the carbs and sugar, like I remember discovering that, and that makes such a big difference. But you don't know, you don't know that whenever you've never, been like, been exposed to any information at all. It's very much like, "Here's your medication. Good luck."

[00:18:29] Christine: So- Yeah. Yeah ... it's important for advocates like yourself to actually be on a podcast like this and chat because I bet someone's gonna listen to it and be like, "Oh, you know what? I do crash out when I eat lots of carbs." And I, and it's something like that, that you're like, oh, that's probably basic enough information for you now, but for someone newly diagnosed, it could be a huge thing.

[00:18:51] Christine: So yeah. It's as you say about you had to create something that wasn't there. 

Creating Hypersomnias Australia

[00:18:57] Christine: So when did you finally be like, "I need [00:19:00] to start advocating and creating something that isn't there"? 

[00:19:07] Michelle: It was fairly quickly because I knew that there must be other people like there like me out there.

[00:19:15] Michelle: And sure enough, I eventually did find people. But it wasn't until I actually met somebody in person, and that initial meeting really changed me. In fact, it changed the course of my life. Oh my. And as it seems, the course of many people's lives, because that was the creation of Hypersomniants Australia and the Idiopathic Hypersomnia Awareness Week.

[00:19:35] Michelle: I met Jess and her mum, and I... Jess was a h- about half my age. So looking at her, I saw myself at that age, and I knew that the path that I had gone down was extremely bumpy, and I just did not want that same path to be what others had to continue down- Yeah ... or to be faced with. [00:20:00] And that was the motivation for me.

[00:20:03] Michelle: I knew pretty quickly though, that it didn't matter what I did, I wasn't going to make changes that would change my life. I'd... My life was already set in stone by that stage. I knew that what I was doing was, would be for the benefit of others, but I had to do something 

[00:20:24] Kerly (2): Yeah, I can see that. 

Obstacles Stigma and Awareness

[00:20:26] Kerly (2): So w- when you were, how, what was it like s- setting it up?

[00:20:31] Kerly (2): Did, what obstacles did you find came in your way, if any? And also were there any mentors that helped you or cheerleaded you on? 

[00:20:43] Michelle: Unfortunately because there was nobody else there was no mentors of such, mentors as such. The obstacles was, were along the lines of the fact that because IH was invisible it meant [00:21:00] literally contacting a lot of organizations sleep clinics, wherever sleep disorders were mentioned, and getting them to include IH, and then finding that they were reluctant to.

[00:21:12] Michelle: It wasn't as simple as saying, "Why don't you have IH on your website, or your list of sleep disorders, or amongst your resources and fact sheets?" Th- they were pretty I don't know. It just... I don't even know if the word against the idea of including IH is correct. They were indifferent. So that was the biggest obstacle, and a shock to me.

[00:21:35] Michelle: But yeah, it was not easy to get IH recognized at all, which is why within the same year of starting HA officially HA was recognized in March 2013, and by September that year the first global awareness initiative started, and that led into the IH Awareness Week. [00:22:00] Because I realized that we needed to raise awareness of IH before we could start advocating for ourselves or before we could start hoping for better access to medications or for more research to be done.

[00:22:14] Michelle: Those things really needed to be done, but unfortunately we needed to start by raising awareness of IH within the sleep space or sleep establishment itself. That was a huge challenge that I wasn't expecting. And to be honest with you, if I had my time over again, considering the challenges, and the initial challenges in particular, I might not have done it again.

[00:22:41] Kerly (2): Wow. Why do you say that? 

[00:22:46] Michelle: They were huge. It was insulting, to be honest. The stigma attached to IH still exists to this day, and I was not prepared for that. It has been a huge uphill battle to get to where we are [00:23:00] today, and we've got a long way to go, but yeah, it's been a long journey. A long journey.

[00:23:10] Christine: It is so frustrating when you tell someone that you have, you have this disorder, and then you're met with insults or just real ignorance. And it's trying to turn that anger into something useful, and but it can be so hard sometimes because there is such a stigma. 

IH vs Narcolepsy Explained

[00:23:29] Christine: One question I had before this is, and I'm sorry if this does come across ignorant, what is the difference between IH and narcolepsy?

[00:23:40] Christine: Is it the absence of cataplexy, or is there more to that? 

[00:23:45] Michelle: That can be a tricky question to answer, and I find it's it's simplest to keep it in its simplest form. So if we're talking about narcolepsy type 1, then that obviously has [00:24:00] cataplexy, and there will be other striking symptoms like hallucinations and sleep paralysis vivid dreams, and disrupted sleep.

[00:24:12] Michelle: And insomnia can also be experienced. Whereas on the other end of the spectrum it's IH with long sleep, and that generally includes extreme sleep inertia and sleep drunkenness extreme sleep lengths. So could be anywhere from, 11 or 12 hours in a 24-hour period to way more, 16 to 18 hours in a 24-hour period every day.

[00:24:42] Michelle: So not just one-off, and then the next day, you're fine again. It's constant. The extreme sleep is constant. And because you don't ever feel fully awake obviously your cognitive ability is compromised. There's a lot of automatic behavior, so a lot of doing [00:25:00] things without realizing it. And then there is this middle land between narcolepsy type 1 and this extreme IH with long sleep, and it includes narcolepsy type 2 and IH without long sleep, loosely.

[00:25:20] Michelle: And those people tend to have symptoms that are somewhere in between narcolepsy type 1 and the IH with long sleep, just without the cataplexy. 

[00:25:32] Christine: Okay.

[00:25:35] Christine: I'm just... I was thinking, I was just thinking if anyone was listening and had that question, 'cause I was reading things and seeing similarities, but then the difficulty is, even with narcolepsy, is that the scale of severity is it's so different. Yeah. I'm sure IH is the same. It's hard for people to identify if they have it or not sometimes, 'cause they're like, "Oh no, I don't have that."

[00:25:55] Christine: And I'm like, "No, but they have an extreme version. You have a a middle, moderate [00:26:00] version." Yeah, I just wanted to check that. Kerly, do you have any 

[00:26:07] Kerly (2): questions? Sorry. I went into a sleep attack. That's 

[00:26:11] Michelle: okay. Okay. 

Work Background and Charity Skills

[00:26:13] Kerly (2): So let's, let me piggyback. When you had to set it up as a organization,

[00:26:19] Kerly (2): what industry were you working in before, and do you think the knowledge you had for that helped with building the charity? 

[00:26:28] Michelle: Yeah, certainly. The last role that I had before I could no longer do paid work was as a financial administrator in a not-for-profit charity.

[00:26:39] Kerly (2): Oh, wow. Oh my gosh, Michelle, that's So you were actually living how it was working, how the system worked doing the finances. 

[00:26:47] Michelle: Yeah, 

[00:26:47] Kerly (2): but, 

[00:26:48] Michelle: yeah, but the problem was that I was spoilt in that role because- 

[00:26:53] Kerly (2): Oh ... 

[00:26:53] Michelle: the charity was for disadvantaged young women particularly women that or young women that have had [00:27:00] children while still at school.

[00:27:02] Kerly (2): Oh, 

[00:27:02] Michelle: okay. So we provided resources and support so that they could continue their education while still being a young mum. 

[00:27:10] Kerly (2): That's nice. 

[00:27:10] Michelle: The problem with that is that the government throws money at that. 

[00:27:14] Michelle: And yeah, that sort of thing. 

Funding Gap Reality

[00:27:17] Michelle: And so I wasn't prepared for the fact that not only was IH invisible to the medical establishment, which shocked me, there was no government funding.

[00:27:29] Michelle: So yeah. Wow. There, so my financial administrator experience has not needed to come in handy 'cause H.A. doesn't get any money. Yes ... yeah, and but I wasn't prepared for that. Like I say, I was quite spoilt in my last role. Getting funding from the government was not difficult at all. There were various programs that we could apply for funding for, and we were always successful and that is definitely not the case with sleep disorders, any sleep disorder in Australia.

[00:27:56] Michelle: Not at all. 

[00:27:58] Kerly (2): That's so sad, though, [00:28:00] because it sh- it shows the, I dunno if it was ignorance, but it shows how much knowledge is out there. Like, where you're saying that the knowledge and the resources needs to be improved because for them not to see that maybe it doesn't have the same type of need as the young mom going to college and ha- being a mother, but it's still not at the bottom.

[00:28:19] Kerly (2): It's still quite up with, the needs. So it's interesting, they... I guess they not having enough knowledge about sleeping disorders on the board wasn't enough for them to take a chance, which is,

[00:28:34] Michelle: Is- that- ... saddening. Even a lack of respect for sleep. Yeah. That is definitely the problem. It's the problem anywhere in the world really, that sleep disorders are just not considered in the same way that other medical conditions are. 

[00:28:43] Kerly (2): Yes. 

[00:28:43] Michelle: That's just unfortunate I know it's the same issue for the UK, and it is in the US as well.

[00:28:50] Michelle: It's definitely changed in the time that I've been around in the US, and that's promising. 

[00:28:55] Michelle: But I know for you guys in the UK it's just as difficult as it is in [00:29:00] Australia to get any kind of funding and support for sleep disorders, and it's quite disappointing. 

[00:29:05] Kerly (2): Yeah, 100%. 

Building The Registry

[00:29:09] Kerly (2): So when you started the registry and also, idiopathic hypersomnolence, did you find that people that were out there were coming to it?

[00:29:18] Kerly (2): You know- Yeah ... they wanted to be a part, they wanted to know what was happening? 

[00:29:22] Michelle: Yeah, I think in the first year to maybe two years that we had the registry somewhere between maybe 150 to 200 people joined our registry. 

[00:29:34] Kerly (2): Oh, 

[00:29:34] Michelle: wow. Which was actually quite amazing because apart from Australia having a relatively small population I created HA's website myself.

[00:29:44] Michelle: It wasn't like I had any kind of experience in terms of building a website that would draw people to it. 

[00:29:52] Michelle: And then I created, a Facebook page and some other social media myself. I didn't have the [00:30:00] skills to get us seen, if it was just totally organic. So I have no idea how it was that people found us, but there was obviously people looking.

[00:30:11] Michelle: That was the message to me. Yes. If I was looking for something, then others clearly were too, and they found us. 

[00:30:18] Kerly (2): That's great. That's good. 

[00:30:20] Michelle: Yeah. It, and it was a wake-up call to me that regardless of the challenges, and they were huge and it's a reminder to me why I did it, why I started it all, is that people do need to feel connected.

[00:30:37] Michelle: They do need to be seen, particularly when it's a chronic illness where the medical profession is so under-educated. It's important that we can connect with others that know how we feel and what we're going through. 

[00:30:55] Kerly (2): Yeah. 100%. 

[00:30:57] Christine: Yeah, definitely. 

Workplace Disclosure Dilemmas

[00:30:59] Christine: When you talked [00:31:00] about, You basically, people end up getting diagnosed in those transition periods.

[00:31:06] Christine: So mine's was when I left school and went to university. It got really bad. - It was noticeable before then, but because my mum was constantly on me, getting me out for school, like I was similar to you. If they hadn't have literally ripped the duvet off me, I was gonna be there all day. So I think the impact that these disorders have on your your career and things like that, do you think that Australia has got any better at accommodating for disorders like ours in the workplace?

[00:31:40] Christine: Do you think it's still a huge obstacle to people's careers? What's it like over there? 

[00:31:47] Michelle: That's a difficult one to answer because it varies. And I... So I think that it has a lot to do with who your employer is personally, not necessarily the company, but who you have to answer to. 

[00:31:59] Michelle: Some [00:32:00] people are very good.

[00:32:01] Michelle: Some people just are not. And it can be very difficult to know whether to d- disclose whether you have IH or narcolepsy, and that has a lot to do with the person that you're disclosing to and how they'll react. Because although there are laws to protect you, obviously, they can't discriminate against people with chronic illness, there are ways around it.

[00:32:23] Michelle: There are ways that a, an employer who doesn't wanna be supportive will make life difficult for you. And if you're lucky, you've, and you've got an employer that is very supportive, then sure you may feel inclined to disclose your condition to them. So I don't know if the situation is any better or worse in Australia.

[00:32:45] Michelle: Like I say, we have laws to protect us, but they don't always, as one thing I do know, though, it, and it goes back to what you were saying of if I knew then what I know now, I come across a lot of people throughout the world [00:33:00] who have pushed themselves to finish university to obtain a degree, and they can't do the work that their degree- Yeah.

[00:33:10] Michelle: ... Qualifies them 

[00:33:11] Christine: for. Yeah, that's me. 

[00:33:11] Michelle: So it's really sad that these people who are otherwise highly qualified can no longer work in the profession that they're trained for or can't start in that profession at all. 

[00:33:24] Christine: Yeah. 

[00:33:25] Michelle: Absolutely. And I think if they knew then what they know now, they may have made different choices.

[00:33:31] Michelle: So I think awareness is important for many reasons. If we could plan our lives better and we had the support to do that, I'm sure many of us would have made some different life choices. 

[00:33:45] Christine: Oh, yeah. I remember being kinda desperate and saying to my consultant "What do your other patients do for work?"

[00:33:51] Christine: And he was like there's no chartered accountants, there's no doctors." And I was just sitting going... And he was looking at me and looking at my kinda [00:34:00] record, and he was like, "I don't know how you got through university the fact that you got this length." But now I am at the position where I'm like, it just feels all those years studying, all that work done, and then not being able to actually go into that profession and practice it is, it's, I'm sure, a dilemma loads of people are in.

[00:34:21] Christine: And it's just it doesn't ha- it shouldn't have to be like that. And I suppose that's why advocacy is so important, because the years it takes you to get diagnosed, the years it takes you to get medication that works for you, and then even beyond the medication, it's it's 20 years easy. It's, at a, nearly at a mi- minimum, which is crazy.

[00:34:42] Christine: And it's sad. I don't want this for anyone else to kinda be, like, so disappointed to embark on something and then have to give it up. Yeah, it's catch 22. 

[00:34:53] Michelle: Yeah. 

Medication Access Barriers

[00:34:55] Kerly (2): So Michelle, do you think that in the future there might be a way that [00:35:00] Australia will open up more so they'll be able to get some funding?

[00:35:07] Michelle: No, not in Australia In my lifetime And not, definitely not in my lifetime. No. 

[00:35:12] Kerly (2): Thank 

[00:35:13] Michelle: God. We may, 

[00:35:14] Kerly (2): This is so interesting, 'cause when I was there, you know the sunflower lanyard to say that you have a hidden disability? It was up everywhere. When I was in Brisbane, in Cleveland, when I was in Co- what's it called?

[00:35:32] Kerly (2): Something Surface 

[00:35:35] Michelle: Oh, Surface Paradox? 

[00:35:36] Kerly (2): Yeah. When I was done that in Miami, that end. And yeah, it was the same 

[00:35:44] Michelle: Yep absolutely. But IH and narcolepsy are definitely left out in the cold, for sure, and particularly IH.

[00:35:53] Michelle: We're still not recognized by a lot of areas in health.

[00:35:59] Michelle: [00:36:00] Absolutely. We have to be... to gain access to medications on our public list, which is much like getting medication through the NHS in the UK, ours is the PBS, the Pharmaceutical Benefits Scheme we are diagnosed with narcolepsy on paper. We don't even have IH on our record. 

[00:36:20] Kerly (2): Oh, wow. That's 

[00:36:21] Michelle: terrible.

[00:36:22] Michelle: I'm traveling World Sleep in Singapore in a week or so time, so I need medication. I need , a letter from my doctor to take my medication overseas, and the letter that is printed out, which comes from my health record, says narcolepsy. Doesn't say IH. 

[00:36:40] Kerly (2): No. That's ridiculous. What? 

[00:36:43] Michelle: Yeah. 

[00:36:43] Kerly (2): They've got the first thing wrong.

[00:36:45] Kerly (2): I can't believe. No, that's the first hurdle. 

[00:36:49] Michelle: So there definitely won't be any money for IH, 'cause our government doesn't even recognize it, and there won't be for narcolepsy, 'cause I guess it's a long [00:37:00] line. And we've all gotta get in line. And as I say narcolepsy is not considered in the same way that other health conditions are.

[00:37:08] Michelle: So we've got a lot of work to do in, in educating policymakers and other bureaucrats that are making these decisions that are unqualified to do so. And that's the problem, and that's a problem- ... in the UK as well. A lot of these policymakers have no health experience and no medical background. But they make decisions that impact our lives 

[00:37:30] Kerly (2): Yeah.

[00:37:30] Kerly (2): And that's the problem, is the impact that you're having on everyone's daily life. 

[00:37:36] Michelle: Yeah. 

Research Doors Opening

[00:37:37] Christine: And I was reading that you were, like you'd be involved with researchers to ensure that the patient voice is integrated. I've always wondered about this. How do you go about that, like in terms of actually being a part of a research project, or do they come to you, like? 

[00:37:55] Michelle: I had a much stronger relationship with researchers in [00:38:00] Europe and the US way before I did in Australia because, surprise, no researchers in Australia were at all interested in IH. And not particularly interested in narcolepsy either. So when I say would I do what I've done again if I had my time over again, there's lots of reasons why I wouldn't, 'cause there were lots of challenges.

[00:38:21] Michelle: I had to try and get researchers in Australia interested in IH to start with. And then I'd learned that it was not necessarily that they weren't interested, although they weren't. But to get funding to study a medical condition you need to have experience in it. 

[00:38:42] Michelle: So, if they're not interested, they don't have any experience.

[00:38:46] Michelle: So it was a catch-22. So I just keep knocking on doors and keep speaking to them, and it was, it actually all happened at once. I'd been knocking on doors with the data [00:39:00] from the IH Patient Registry for years saying, "Look, there's all this data here. Is nobody interested in looking at it?

[00:39:06] Michelle: Surely we can publish a paper from this." But it was IH, and they don't care about that. So no. Until about two years ago a light bulb went off at the Woolcock Institute of Sleep Medicine when I was there for a meeting, and it was, "Hang on a minute, we could do something with that data." Then that sort of paved the way for more interest.

[00:39:33] Michelle: And then the orexin agonists came around, and yeah, I was able to have meetings with drug companies. And then, yeah, they decided to trial in Australia. I must say, it's not the first time that drugs have been trialed in Australia for narcolepsy. They also trialed sodium oxybate, but they left without registering the drug here.

[00:39:59] Michelle: So we don't [00:40:00] have access to sodium oxybate. They trialed it, but they ran off with the data and the- got it registered in the US and around the rest of the world for narcolepsy. But, and then eventually, I hope in the US, but nothing happened here. We still don't have access to sodium oxybate. But we hope that will be different with the orexin agonist 

[00:40:24] Kerly (2): Yeah, I think the new one will be good, but it's such a pity that it didn't have the support now for people that need it now.

Advice For New Advocates

[00:40:30] Kerly (2): So if you were to give advice to someone who was recently diagnosed or really wants to get into advocacy work, what would you tell them?

[00:40:42] Michelle: Even without asking them how they're coping on their medication, I could safely assume that they're probably not doing very well. So I would probably prepare them for the limitations that their medication will present. Then [00:41:00] that access to medications is limited, so it's not if this one doesn't work, there's gonna be a range of others, 'cause there's not- in Australia. There is two, maybe three if you count something off-label, four if you count something off-label. But really it's dexamphetamine and modafinil and armodafinil, and that's it. So I would definitely start with being fairly honest with the treatment options that are available and the limitations surrounding them.

[00:41:31] Michelle: And then the good news is that there are people out there that do know how you feel and do know what you're living through, and make connections with those people because it will be important. I've never met anyone that has met somebody else with IH or narcolepsy and hasn't been glad that they've done so.

[00:41:50] Michelle: So yeah. That's true. That would be probably the best part of the advice because it's never nice hearing that there's medications not much good and that [00:42:00] there's, not a lot of options out there. But it's the truth and people do need to have that reality. But as I say, the good news is that there are communities now that you can reach out to

[00:42:15] Kerly (2): Yeah. Yeah, which is good. I'm so glad that you did that. 

Creating IH Awareness Week

[00:42:19] Kerly (2): And so what did you have to do and who did you have to contact in government, I'm assuming it's someone in government, I might be wrong, in order for you to have been able to have the IH week established? 

[00:42:32] Michelle: Oh, I just did it. Ah. 

[00:42:34] Michelle: I 

[00:42:36] Michelle: just did it. I just said, "This is what we're doing," and we're doing it.

[00:42:39] Michelle: That's it. There's no requirement in any country really to say that you're going to have an awareness initiative. 

[00:42:48] Kerly (2): Ah. 

[00:42:49] Michelle: All it takes is for people to embrace it. 

[00:42:53] Kerly (2): Okay. Different. 

[00:42:53] Michelle: That was easy in the IH community because there was a lot of people that were desperate to be seen. 

[00:42:59] Michelle: Actually, that's not the [00:43:00] best way to describe it.

[00:43:00] Michelle: They were desperate for IH to be seen. Yes. A lot of people with IH don't wanna be seen- ... because of the stigma and- ... various other reasons. So it's sometimes difficult to get people with IH to be the face of it. I don't like it either, really. I much prefer to stay behind the scenes, but there were a lot of people that were desperate for IH to be seen.

[00:43:22] Michelle: For sure. 

[00:43:25] Kerly (2): So that was nice that you made that possible, and not just a day. I like how you spread it out to a week, so that's, that's very cool. So I call IH narcolepsy's sister , and KLS its brother since we're all in the central hypersomnia's umbrella.

[00:43:38] Kerly (2): And I just realized that actually KLS doesn't have a day. Oh. Not in the US or the UK. I thought, they should have one, I think that it would be good if they, they also had one. 

[00:43:51] Michelle: Yeah. Oh, I agree. And gee whiz, if somebody wanted to do it I'd be quite happy to give them any advice that I could pass on for sure.

[00:43:59] Michelle: [00:44:00] But- 

... 

[00:44:00] Michelle: It can be difficult to get people to embrace it if it is so rare, and K- and KLS is so rare. So- ... it would be difficult, but sure, if somebody wanted to do it I'd be there to help them. 

[00:44:14] Kerly (2): Oh, you hear that listeners who have KLS? Get in contact with us. 

[00:44:20] Michelle: Oh, . 

Morning Routine Hacks

[00:44:20] Michelle: i do just have one other thing that I thought of about when you mentioned lifestyle changes. One thing that I'm constantly asked is, "How do you wake up in the morning?

[00:44:30] Michelle: What,.. tips and tricks do you have?" And this is the best that I can do, but it definitely makes a difference for people with IH who struggle with sleep inertia and sleep drunkenness. That is that I have my medication out in a little medicine cup the night before, and I have a water bottle that doesn't require opening.

[00:44:50] Michelle: It's a pop top water bottle because I'm not in for opening lids or, that's why the medication's already out in a little medication cup, and it's there on my bedside [00:45:00] table. My daughter will wake me, physically wake me, and make sure I take that medication. That's the best that she can do. If that medication is in me, then I have a much better chance of getting through the constant returns to sleep.

[00:45:15] Michelle: 'Cause I'll return to sleep immediately after taking that medication, and more often than not have no memory of taking it at all or seeing my daughter at all. But it, the key is getting that medication in me. And then that will assist with the rest of the waking up. And then when I can physically safely get out of bed and walk I go out into the sun.

[00:45:38] Michelle: Oh, wow. Because vitamin D and sunlight is key. That's the next key. So yeah, providing the weather isn't too bad I will stand out in the sun for five to 10 minutes. Sometimes longer if I can. 

[00:45:53] Michelle: But definitely as much for as often as I can, I'll do that. 

[00:45:59] Kerly (2): [00:46:00] Ah, I must try that one. 

[00:46:02] Kerly (2): Definitely.

[00:46:02] Kerly (2): Yeah, the sunshine one. Yeah. I'm need to work on that. Like I'd forgot to take my... I got up at 7:00, and then I fed the cats, and but I didn't, hadn't eaten yet and I, because I knew I would be more sleepy. Which a good thing I didn't eat, because I was sleeping here. So imagine if I ate. And but I thought I took my meds, and I didn't.

[00:46:24] Kerly (2): And then as you were saying that, I was thinking, "Oh yes, I didn't take them yet." 

[00:46:28] Michelle: Yeah. 

[00:46:29] Kerly (2): Oh, yeah. 

[00:46:30] Michelle: Yep. Yeah. I actually take my glasses off, and because my glasses have a tendency to transition with a bit of a, a tint on them when I'm outside. Oh, yeah. But I take my glasses off, and I don't look directly at the sun, but,

[00:46:43] Michelle: 'Cause it can be quite bright in Australia in particularly in summer, but I do look towards the sun. And I usually lean on my pool fence because- ... I'm still struggling physically to be upright.

[00:46:56] Michelle: And I'll stay there for as long as I'm comfortable, and then [00:47:00] I'll come inside and start my day.

[00:47:02] Michelle: The next key is coffee, but that's just a personal thing. 

[00:47:05] Christine: No, that's really good advice. I think I sometimes see if I delay getting outside or I do something else, then I forget. I'm like falling asleep. I'm like, "Oh." But yeah, that's really useful advice. Get the medication in you, and get outside. 

[00:47:20] Kerly (2): Yeah.

[00:47:21] Michelle: Yeah. Yep. Definitely. For sure. That it's not fool proof but it's definitely helped me over the years. 

[00:47:28] Christine: Yeah. 

Red Button Reflection

[00:47:30] Kerly (2): Michelle, thank you for coming on Narcolepsy Navigators. We have one more question to ask you. Christine, would you like to ask her the red button question? 

[00:47:40] Christine: Oh if you could press a red button and take away IH, would you?

[00:47:49] Michelle: Oh, that's actually a difficult question. If I was just somebody with IH, I'd say yes in a heartbeat. But I've now met so many wonderful people. Yeah. [00:48:00] No, I, oh God, that's a hard question, 'cause I've met so many wonderful people all over the world. Yeah. Oh, gee, I don't think I can answer that, 'cause all of those people wouldn't be in my life.

[00:48:12] Christine: Life, yeah. That's okay. Yeah. I can't do a yes or no either, so mine- is a partial response. Yes, not for no. I've 

[00:48:22] Michelle: met some people that have changed my life and- Yeah ... made a significant impact on- 

... 

[00:48:28] Michelle: On my life, for the good

[00:48:30] Kerly (2): We like to end the podcast by saying, "Happy napping, everyone."

[00:48:34] Kerly (2): One, two, three. 

[00:48:37] Michelle: Happy napping, everyone. 

[00:48:38] Kerly (2): Happy napping, everyone.

[00:48:40] Christine: Thank you so much, Michelle.

[00:48:42] Michelle: It was very nice meeting you, Christine. Thank you. 

[00:48:44] Christine: You too, Michelle. It was lovely to meet you.

Closing Credits Support

[00:48:48] Speaker 3: Narcolepsy Navigators is produced by a team of volunteers working for the Naps For Life [00:49:00] CIC, which is a nonprofit group dedicated to improving the lives of people with sleep disorders through community action. You can help grow our podcast and join our sleep disorder support group by visiting the website www.napsforlife.com.

[00:49:18] Speaker 3: If you or someone you know has a sleep disorder and would like to share your story on Narcolepsy Navigators, please email us at narcolepsynavigators@gmail.com. You can also support us by donating at the website. Happy napping everyone

[00:49:45] Speaker 4: 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 [00:50:00] well as a shout-out on the show. Subscribing to our Patreon will allow you to 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.

[00:50:18] Speaker 4: Higher tier supporters can also receive Patreon merch. Or if a monthly subscription is not in your budget, you can check out even more merch on our website, www.napsforlife.com. This week, we would like to have a shout-out to our very first Patreon supporter, Katie, and our second Patreon supporter, Jane Powell.

[00:50:45] Speaker 4: Thank you very much for your support