Advocacy Series S1E1: Why Narcolepsy Is a Family Diagnosis, Not Just an Individual One

Narcolepsy is often misunderstood, dismissed, and dangerously underdiagnosed — especially in women. In this powerful Advocacy Series episode, we sit down with Dr. Anne-Marie Morse, a neurologist with specialized training in child neurology and sleep medicine, to talk about what real advocacy looks like, why diagnosis delays can stretch nearly two decades, and how patients can reclaim power in the healthcare system.

Dr. Morse breaks down one of the most important truths in sleep medicine: language matters. Words like tired, fatigue, and sleepiness are not interchangeable — and using the wrong one can lead to missed diagnosis and years of suffering.

We also discuss the emotional reality of narcolepsy: grief, identity, guilt, family dynamics, and why peer support and global community are essential. From workplace wellness myths to school system failures, this conversation is both validating and activating.

If you’ve ever felt unheard, minimized, or reduced to a score on a scale — this episode is for you.

In This Episode, We Cover:

• Why narcolepsy impacts an entire ecosystem (family, friends, school, work)

• The average delay to diagnosis — and why women face longer delays

• The difference between sleepiness vs tiredness vs fatigue

• Why you are NOT your Epworth Sleepiness Scale score

• The best question a doctor can ask: “What can’t you do?”

• The grief that comes with diagnosis — for patients AND families

• Why mental health support should be standard in chronic illness care

• How peer support can prevent isolation and long-term disability

• Why sleep should be treated like water — essential, non-negotiable

• How advocacy needs to become global to create real change

Key Takeaway

“We need to create treatment regimens that fit people’s lives — not lives that fit treatment regimens.” 

Dr Ann Marie Morse

Resources Mentioned

Project Sleep

Hypersomnia Foundation

Wake Up Narcolepsy

Faces of Narcolepsy

Julie Flygare’s book: Wide Awake and Dreaming

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Transcript

Dr Ann Marie Morse
kerly: [00:00:00] Hi everyone. Welcome to Narcolepsy Navigators. I'm Kerly , your host. I have narcolepsy, type one. Today we are going into a new series. It's called the Advocacy Series. I'm here with Christine, who's the co-host, and Dr. Annemarie Morris. Christine, introduce yourself. 
christine: So I'm Christine.
I operated under like a alias for a while as the girl who ran away in her sleep. I still have that as my, Instagram but I eventually got the courage to step out and be like, yeah, it's me. I started blogging about narcolepsy. I've been diagnosed in 2017 quite late on when I was in my first graduate job.
I realized no one knows what this is and was getting super frustrated. So I thought I would start writing a blog from my point of view. It's mostly relatability, a little bit of science if I can explain it. But usually just how I'm feeling people are like, I feel like that too.
And I'm like, oh, okay. There's more of us. So [00:01:00] yeah, that's essentially my story. I am from Derry, but I'm based in Belfast, Northern Ireland. 
kerly: Thank you. And we have Dr. Anne-Marie today. Dr. Anne-Marie is a neurologist with special training in child neurology and sleep medicine specialist.
Although recognized as a successful leader thoughtful clinician and inquisitive researcher, she views her most important role in medicine as being a healthcare partner. Advocate and change maker. 
Ann Marie: Welcome, Dr. 
kerly: Anne-Marie. 
Ann Marie: Welcome. Thank you it's very exciting to meet with both of you today and unpack all the opportunities that exist in regards to advocacy and patient and family empowerment because this is a condition that doesn't just impact the individual.
It impacts their entire ecosystem, friends, family, loved ones, being able to [00:02:00] provide some guidance on what can you do today to have a better life today is really an awesome opportunity.
christine: thank you so much for joining us. It's a real treat, to get some time with an actual sleep doctor, because usually I have five questions and I only have an appointment every six months Would you like to start off with your weekend?
kerly: Yes. So my weekend yesterday I went to, they had a disability day at a church about 25 minutes away. Both my parents used to be teachers, Another retired teacher of theirs works with this charity She asked me if I would come down in the afternoon they were talking about hidden disabilities and she asked me if I would do a presentation on narcolepsy. So I went to do that in the afternoon. Wonderful. 
christine: I went for drinks on Friday and I went to a comedy gig, which actually I have cataplexy in my jaw, but I never really knew. [00:03:00] They're always asking me about my legs. Sometimes I just can't get my head up when people are like, she must think that is so funny.
But I didn't realize that it was cataplexy for a long time. So that's what we did on Friday night. Then Saturday I built a table for my living room, so I was exhausted after that. I was like, I need a nap. So yeah, that's been just a weekend of getting ready for work on Monday.
Ann Marie: So far, it's been an incredible weekend. I really try to reserve time to spend with my, kids and my husband. Friday was typical workday, lots of meetings, getting to spend some time with patients. Saturday I went to the gym in the morning and then spent some time in the office my family was at the roller skating rink.
My husband and my two kids are avid roller skaters. I'm always afraid that I'm gonna break my arms or legs doing that. So I go and spectate it's great to see how my 4-year-old and almost 8-year-old, whip around that rink. Today we're having a snowstorm.
So we're all snuggled into the house now. 
kerly: Kids don't [00:04:00] have any fear I wish I could go back to that, . Innocence. 
What was the spark that ignited your passion for sleep advocacy? Was there a moment when you thought, this is my purpose. 
Ann Marie: Sure. This is a long-winded story, but I'm gonna try and make it as succinct as possible.
The whole reason I became a physician is, rooted in advocacy and recognizing that healthcare was failing patients every single day. That was based on my mom's experience. My mom doesn't have narcolepsy, she has multiple sclerosis, but there are so many alignments around the diagnosis of multiple sclerosis.
The delays, the. Burden, the disability, the quality of life overall. Multiple sclerosis is a condition where it's very visible. I can see that you have a hemiparesis that's not getting better, as opposed to a condition like narcolepsy where it's invisible and gravely stigmatized. But yet that same degree of burden is present.
When my mom was diagnosed almost 30 years ago, she did have a delaying diagnosis, was told, similar to people who are on a [00:05:00] narcolepsy journey. It's in your head. You have postpartum depression, you have all these issues, but the reality is she had a true neurologic disorder because of that interaction, she didn't wanna seek care and would even deny the diagnosis.
Leading up to me going into medical school and me telling her, you need a neurologist. You need to acknowledge this because I'm not gonna be the neurologist with a mother who denies that she has multiple sclerosis and doesn't have a neurologist. From that point forward, I continued to identify very, very similar circumstance in patients that were in my own care where I would see that others were disregarding or invalidating their lived experience because it didn't make sense to them because they were unable to think beyond the information that they were hearing or the information that they were taught.
And when I ended up going into sleep medicine, my interest was not actually based in narcolepsy. Like many neurologists, I didn't have a complete awareness of what narcolepsy or idiopathic hypersomnia were. I wanted to go [00:06:00] into sleep medicine because I recognize sleep was so critical for every single person's life, and as a neurologist, I saw many patients who were suffering more from their neurologic disorder because of unrecognized sleep disorders.
And so really looked at it as an opportunity to utilize sleep as the tools designed to be. To further optimize my ability to diagnose prognosis and therapeutically intervene across neurologic diseases. I was biased when I went into sleep medicine training. I said, I wanna go to a neurology based sleep medicine training program.
I don't wanna just be a respirologist, I don't wanna only treat sleep disorder breathing. I wanna be able to treat the whole person, and I wanna have this focus on the brain. I was very fortunate that I ended up at Montefiore, in the Bronx, New York. Dr. Michael Thorpe is there. He is very well known in the space of central disorder, hypersomnolence.
My program director, Dr. Imran Ahmed, is one of the most incredible educators and champion of. Full development of a trainee. During that time Jazz [00:07:00] Pharmaceuticals was doing a clinical trial for pediatrics with their twice nightly sodium Oxybate, also known as Xyrem.
I was under Dr. Michael Thorpe as an investigator in that study. We ended up being one of the higher recruiting sites. through that immersive experience I recognized how disabling this condition is and how when you appropriately recognize. And partner with patients and families and then provide interventions that improve the disability they're experiencing.
How life changing it was. It was truly, I believe, life saving for some of these children. I always tell people, when I remember this clinical trial, the part that was so influential for me, the design of it was a doubleblind randomized withdrawal trial. Meaning that everyone who's enrolled gets exposure to the medication, they get optimized on medication.
When it comes to randomization day, it's the flip of the coin of do you continue on drug or do you get placebo? The tears of fear. we were taking [00:08:00] children who, went to the playground but just slept on the bench who were failing in school.
Even though they were capable of straight A's, who no longer were participating in the sports and athletics, that they were the MVPs, the leaders that they were hoping to get college scholarships for, and being able to completely revive those. Those things was just such a monumentally, incredible experience because at the time in neurology, I wasn't seeing that in other disease states.
And so from that point, I was privileged to have this fortuitous route where I met people like Julie Flagger at the beginnings of her establishing project sleep and her presenting on how important social support is. the things that you're doing right now with this podcast of being present in other people's lived experience who are feeling isolated and alone.
And so for me, I see that there's so many gaps that continue to exist, physicians who are continuing to failure to recognize [00:09:00] this condition. Who are underestimating or under appreciating what the disability is invalidating, what people are endorsing as the consequence of this and narrowing it down to how you perform on an upward sleepiness scale.
advocacy is not something that I chose. It's something that chose me. 
christine: one of the things that we've encountered is getting our condition diagnosed and recognized. Sure. For you as an actual neurologist, have you found like difficulties along the way in being heard or getting things addressed. Would you say that it's a difficult route to go down? 
Ann Marie: So I think for many people both anecdotally in my experience, but also it's very clearly documented in medical literature. The average delay between symptom onset to diagnosis is likely underestimated with recent publications demonstrated.
Women are most typically as long as 19 years to diagnosis [00:10:00] and men about 12. The reason for this is because when you're talking about the words utilized by the person who's living it and the words utilized by the clinician, 
if a clinician is listening to what they're perceiving, you may have the inappropriate words that the patient might be utilizing to describe what they're experiencing because no one comes with a diagnosis and a, dictionary to say, these are the words I need to utilize to ensure that my physician is actually appreciating what I'm describing 
in that journey of so many years of diagnosis, it's not that an individual is being complacent and just accepting this deterioration of quality of life. On average it's three to five specialists that they're seeing. And along the way, getting either missed, diagnose or having a diagnosis just missed. One of the things that I would say is most commonly encountered, and I had two publications on this last year, is around the words that are being used.
in medicine, we see this commonly being [00:11:00] inappropriately exchanged. The three words that I very frequently want patients to hear who are on this journey is sleepiness. Fatigue and tired. Many people use those interchangeably and they mean very different things. when discussing this with someone in healthcare, if you're using fatigued or tired, you run the risk of being missed because those are representing different things.
And if you're saying sleepiness and your clinician is saying back to you, how long have you been fatigued or tired, redirect them. As a patient on this journey is to ensure that the words you're using or describing exactly what you're experiencing and when someone is repeating that back to you, correct them if they are inappropriately summarizing what you're suffering with.
christine: That is so true. I had someone say to me never say tired, always say excessive daytime sleepiness. Yes. You're so right, the terminology when you're trying to [00:12:00] describe how you're feeling the regular person is tired, but it's fixable.
Whereas ours, it's a completely different, level. It's very important to distinguish. that's the difficulty even when we're advocating, people are like, ah, you know, you're tired, like, whatever. And you're like, no, no, no. This is like sleep debt. We're gonna shut down.
That's very important for anyone listening that is struggling to communicate with their practitioners 
Ann Marie: When describing sleepiness, come to your appointments prepared with the goal that you have, what is the disability that you're experiencing, and making sure that you're looking beyond your sleepiness as well as what's contributing.
Many times what is, invalidated or underappreciated is the sleepiness. However, the other REM dissociative features an individual may be experiencing, like nightmare disorder, sleep paralysis, sleep related hallucinations, sometimes get underappreciated because they don't appear to be to the average clinician, something that's a treatable goal, but they're very [00:13:00] treatable.
They're both behavioral as well as pharmacologic options that can be applied that improve those things. When we're talking about sleepiness, do not allow anyone to ever tell you that you are summarized by a number on the upward sleepiness scale. I frequently state, I have yet to have someone enter my office and say, hi, I am a 17.
The most important question I ask my patients is, what can't you do? Because of your narcolepsy. Whatever that initial response is, is the treatment goal because that was the thing that was highest priority to them. If it's that I can't hang out with my friends after school, even though I'm getting straight A's if it's that I'm at work and I fear that I can't get a promotion because everyone else socializes after work, I can't go out on date night with my husband.
Those are my treatment goals, many clinicians will go, what is socially important? Societally important. You go to school, you have a job. If those two things are checkmarked, then the other things you're asking for too much, that is unrealistic. 
We need to create treatment [00:14:00] regimens that fit people's lives, not lives that fit people's treatment regimens. 
christine: So good. 
It on a wall somewhere? 
kerly: Yes. It should be packed. 
christine: Amazing. 
kerly: So you've built an incredible reputation in the sleep health community.
What was one of the biggest hurdles you faced early on and how did you turn it into an opportunity? 
Ann Marie: Yeah, I think there might be several hurdles. I was blessed to be invited to opportunities early on. Because of my participation in the clinical trial with jazz pharmaceuticals I was very active in that clinical trial.
I, from a fellowship was invited to attend some advisory boards and then start working with some amazing people like Emmanuel Mignot, Kieran Maskey, and I really give credit to my husband as being supportive of me because early on, I suffered with imposter syndrome.
When I look at it in [00:15:00] retrospect how did I get the seat at the table? I shouldn't be here. my husband reminds me of it all the time the very first time that I'm sitting at this table and it's these people, it's, it's my mentor, Dr. Michael Thorpe.
It's Emmanuel Mignot, it's other big names like that. And I'm texting him going, oh my gosh, I shouldn't be here. And he, his response was. If you weren't supposed to be there, you wouldn't have been invited. . And then somewhere along the time I come out because of my adhd, I couldn't suppress anymore.
And I just blurt out something that I was thinking in regard to that. And it was one of those peers who said, you know, I've never thought about it like that. That's actually a really good point. 
You have something to share. From that point, what I think that allowed me is to overcome that barrier I've always thought about problems differently. I always thought about how to solve them differently. I always asked why and many times would get will you just please listen to what I'm saying?
And stopped asking why all the time. But I'm like. [00:16:00] But why? And so I kind of was like Pinocchio because everything was so new and novel and I just truly wanna understand. And I think because of that mindset, it now has really enabled me to get over imposter syndrome. There's just as many people as me who feel like they don't deserve or earn that seat at the table, but also just accept blindly, this is the way things are done.
When you start introducing novel concepts of treating the person better? People go, you are right. We are doing that, aren't we? Why are we doing that? I think that's the barriers that were hardest to overcome.
if I were to summarize in one statement, it was my own insecurities. My own insecurity was probably the biggest barrier. leaning into community, relationship building, seeing what things other people don't know, allowed me to continue to rally the troops.
not knowing is not a failure. Not knowing represents the greatest opportunity we all have, which is to [00:17:00] fill in the gaps. That is an ongoing process, but one that I now embrace rather than running away from. 
christine: I really relate to that as well.
I think in the advocacy space, you're like, well, are people gonna listen to my story? But when you realize, when you share your story, how many people are affected by narcolepsy that have no one to relate to? It kind of pushes me to get past that insecurity.
share more because this really does help. Especially in Northern Ireland, there's only gonna be roughly a hundred people. So you're just like, feel like this unicorn, like does anyone else feel like this? And then loads of people are undiagnosed feeling like this.
So that's always my motive. Someone has this that doesn't know they have it, and they could be driving around. Putting themselves at risk. In relation to the advocacy, you're working as a neurologist, it's a lot to deal with. In terms of advocacy work, you're educating, motivating, sometimes even mediating.
Ann Marie: How do you balance all of these rules while staying true to your core mission? 
One of the things I'm passionate about in the clinical space is talking about work-life [00:18:00] balance and burnout. I reflect on a period where I didn't recognize I was burnt out and, committed to living each day purposefully.
Ann Marie: one of the things I've learned is that many times burnout and balance people are going after is really thinking about how do I do everything 50 50? And that's just not realistic. Life isn't 50 50. Life isn't fair. Life doesn't give you a nice even split of all the things that may be a responsibility.
What I go after is really number one, building the ecosystem, building out who are the partners who share in this passion and purpose, and how do we spread out as a team, how do I appropriately communicate and share in that communication with my team so that we're able to deliver on a mission that's much bigger than any one of us individually.
. The second part is understanding that. No two days are the same. There are gonna be some days that maybe it's a 60 40 split and other days it's [00:19:00] 80 20. That comes back to the communication of being able to share with , my team from a work or advocacy perspective, this is what I have available to contribute, but then equally personally, to my husband and my children of mommy has to travel, or I'm gonna be away for this many days, we're gonna FaceTime so that I'm still present in your life, but I'm not gonna be physically here to bring you to school or to have dinner with you tonight.
And those are some of those individual compromises that you have to be able to reconcile for yourself. And that to me is one that as a mom, has become a high priority. Because frequently people ask me, you do all these things and you're a mom. How do you manage that? 
I hope that my children see it as me being a role model and how important it's not to invest just in yourself, but to invest in others because that's the greatest reward that one could potentially have, seeing , the impact you can have for others to live a better life. And so with that, , I'll actually be in the [00:20:00] UK later in February speaking at the sleep charity event.
I feel fortunate to be a part of so many different advocacy organizations. I'm bringing my daughter, she's turning eight in early February, and I'm bringing her with me because I want her to witness what it's like to be a part of something bigger and understand that when mommy's not at home and traveling, it's because of commitments chosen.
To be able to elevate others in a meaningful way doesn't minimize her or my son, but really is a reflection of what I want them to be able to contribute to in the future. 
christine: She'll love that, 
Ann Marie: she's excited. She's been telling everyone she's going to London and Paris for like five months now, 
Oh, that'll be amazing. Yeah, London's great is it in London? 
The conference is in Doncaster, so we're gonna be flying into London, spending some time there. Then , take the train to Doncaster, come back, spend more time in London and take the train to Paris. So really try to take advantage of it.
christine: Yep. I love doing that. When you're [00:21:00] traveling, for work tacking on a couple of days to Go somewhere else. Amazing. Since doing advocacy, who your 
Allies and mentors or unexpected supporters along the way have been. 
I think what has been fascinating is seeing how, as you progress in all this, , and again, in full transparency, I'm still technically considered an early career clinician because I've only been practicing independently for about eight years. 
In that time within my first two years, I took over the division of child neurology and established a division of pediatric sleep medicine. I created a residency program for child neurology. I've had multiple funded research projects have the opportunity to speak all over the world.
christine: So, have had these amazing opportunity to develop all these accolades. And what I've realized is that some of my biggest champions and mentors also sometimes take the role as mentee, where they're like, help me understand how you're [00:22:00] doing these things. my chairman Frank Mcfe, who is one of the most amazing humans on earth.
He's a brilliant pediatric intensive care unit physician and is probably one of the most humble servant leaders you can see. The times that he comes to me and it's just like, I don't fully understand how you do all this, where does this come from?
Sometimes it's me educating him, but he's been one of the most important partners for me in my career. I've also had tremendous allies, as I mentioned with Julie Flagger. We frequently say that we met each other in sleep advocacy infancy. I was a sleep fellow and she was transitioning from the Pancreatic Cancer Society to fully investing herself into project sleep.
 We have continued to grow and collaborate. I'm on her executive advisory board where she has a combination of clinicians and patients because we bring different expertise. Had have had the opportunity to also serve with some incredible people with the Hypersomnia [00:23:00] Foundation, Wake Up Narcolepsy, Faces of narcolepsy
Quite influenced by people like Emanuel eo in Eve Doer Kieran Maskey. Michael Thia one of my closest mentors and very close friends, Sanjeev Ari a pediatric neurologist, epileptologist and sleep medicine specialist, has continued to really shepherd me along the way.
But I would say that the people who have been my biggest mentors are my patients because , they, are willing to trust in building a relationship with me, are vulnerable enough to share with me the things that scare them as well as what invigorates them and drives them and are willing to tell me when they don't agree and they wanna do something different.
And so the fact that we have such a great opportunity to be truthful and transparent with one another, and that they trust. This relationship to say, I think that together we can grow and thrive. That to me , has been the most [00:24:00] meaningful,
kerly: you work a lot, you're with children. that also means that you're working with families and individuals navigating , complex conditions.
What's one story from a patient or family that stuck with you? 
Ann Marie: Yeah, there are so many not only within narcolepsy, outside of narcolepsy, butthe experiences that stick with me the most are, diagnosis days wherewe've come to the diagnosis because we've done the testing, or perhaps based on your clinical history, you clearly have narcolepsy.
I have zero doubts. Of course we're going through the process of the formal diagnosis, but you clearly have it. then I start to describe what this condition is and there's these tears that emerge that are coming from both, many times the child as well as the parent. These experiences are highly variable.
Sometimes these experience are, are tears of joy of that someone finally has listened to what we've been saying and seeking out care for. Sometimes they're tears of guilt. I feel horrible that I've been [00:25:00] telling them to try harder, that I said, you have to be on drugs. I refuse to let them hang out with certain friends anymore because I thought they were bad influences and they were staying up late and that's why they were so tired. 
And there is really just this entry of being able to name what it is that they were experiencing, and sometimes in those moments of joy, there also is this clear griefof what was lost. And I would say that my next favorite day is when we have them on a treatment regimen and there's the reemergence of the child who the family thought they lost, or the reemergence of , the child themselves identifying.
Ann Marie: I haven't been this way since. X years old. , and that to me, I think is probably the most influential . Those journeys are not quick. They're not a matter of a day or even weeks, and sometimes it can be years because many times it also is the [00:26:00] unconditional of all of these characterizations and qualifications that we now have embedded as who we are.
Oh, I can't do that. I'm too lazy. I'm too stupid. I'm too fat. I'm clumsy. That's why, you know, I, I just, I like these cup that have the lid and a straw because I tend to drop them , this works well for me it's these little things that sound maybe to some too nuanced to matter, but it does matter because if I'm at a party and someone doesn't have one of those cups, I just refuse to drink.
I just refuse to drink and maybe keep my hands in my pocket or try to keep them doing something else so someone doesn't hand me anything. These are the compromises people make on a daily basis, and it sometimes takes that purposeful discussion of really dissecting an understanding or even the individual doing something like a symptom diary to understand what are the compromises that you've accepted in your own life that really are unacceptable and that [00:27:00] are normalized.
Because the fact that you don't know any better. for me, when we get to those types of realizations, it really is so rewarding because you are seeing someone blossom back into the person they were meant to be. it's, a beautiful thing to see. 
You
kerly: talked about grief that's something we talk about a lot in , the community especially since Covid, I found a lot of people are talking about that grief of letting go of what you missed or what you thought your life was going to be.
Mm-hmm. 
kerly: I can't imagine, my symptoms started at 15 and I was diagnosed when I was 18, so I can't imagine what that must be like when you are younger. 
Because I say 
kerly: , now I've lived more of my life with narcolepsy than I have without, but if you started even earlier, then you don't even have, a reference of what it was like before. In your practice, , is there any grief counseling or service that's offered. 
Ann Marie: Sure. So I'm very fortunate that we have a great psychology team who help with a variety of sleep services.
Everything from sleep study [00:28:00] preparation to CEP desensitization, cognitive behavioral therapy for insomnia, cognitive behavioral therapy for hypersomnolence disorders. But for me, one of the things that I'm very passionate about is whether you were diagnosed with narcolepsy or epilepsy, 
I am an advocate for psychology to be involved because it creates an opportunity for building your emotional intelligence, self-awareness, and self-management. Being able to learn how to identify and cope with emotions that perhaps you didn't even realize you were having 2018, I created a social support group. called Launching the Empowerment of Adolescence Program. This was formed with , my pediatric residents in response to seeing so many teenagers who were attempting or actually taking their own lives.
And a common thread were that they were teenagers who had chronic disease. with leap, We do bowling or escape rooms, something that is not medically related, never on a hospital campus, but bringing together teens who have any chronic disease, it is the shared experience of [00:29:00] feeling as though, why me?
Why did I get struck down with some additional burden? It's hard enough to be a teenager, if I could give a class on coping skills and emotional intelligence to anyone I would, but I think it's exceptionally important for teenagers you're undergoing this rapid development in your brain.
You're trying to figure out how to fit in without sticking out, I do think that is very important and we do make sure that we try to proactively attend to that. 
kerly: That's so good. I think that's what's missing. And don't you find Christine in Europe. I think that is something that would be beneficial.
christine: what we need. . Let's build it. 
kerly: What 
christine: are 
kerly: we waiting for? 
christine: Let's go. we probably should try. , 
 
Ann Marie: The family members also grieving 100%. 
And it's the grief that the family members may see is very complex. You can have siblings who are grieving the anger they felt Towards their sibling. 'cause they couldn't go to Disneyland or they had to skip [00:30:00] something they wanted to do before they were diagnosed. Now they're grieving the fact that they weren't more understanding or supportive. Then there's the grieving of parents I should have been a better parent. I should have recognized, I should have advocated. But then there's also the grief of what if I did something differently? Would his life have been different?
Would he have been more likely to get into the college of his choice? Would I have prevented them from experiencing one, two, or three? the emotional journey that occurs with the diagnosis is not limited to the individual who has been experiencing the diagnosis of narcolepsy alone.
It goes. Across so many people and is not limited to just the family. We see this with friends, we see those with faculty in school. The tremendous amount of guilt and grief of, oh my goodness, we made that kid have detention multiple times for being disrespectful and falling asleep in class.
Or [00:31:00] we find the family because the child had missed so much school or was tardy. I just dealt with this recently that a school had called the Child and Youth Services in a child who has an established diagnosis of narcolepsy because of the school's ignorance around being better educated on what narcolepsy looks like and what are the accommodations that would be necessary and how to best support rather than alienate this child and family.
christine: I think the support going through education is crucial first it's crucial to get diagnosed, to get that support. I was diagnosed right in the middle of doing chartered accountancy exams and I was just starting to fail. Before that, in school I was overcompensating, I'd fall asleep, then I'd wake up and I'd study, study, study.
Mm-hmm. And I was just this constant state of, I'm gonna fail if I don't keep working. I knew this tiredness was there, and it was [00:32:00] abnormal. is it easier to be diagnosed when you're much younger and it's all you've ever known and you adapt and get the support as opposed to adults like myself who are diagnosed at a later time, an inconvenient time that I felt was really unfair because I was like, oh no, if I had known this sooner, I could have got the support. I would be able to have extra time.
Do you think children maybe bounced back a bit quicker than adults who've lived longer without being diagnosed? 
Ann Marie: So I think when you look at any medical disorder there are different barriers and burdens based on the age of diagnosis. From a brain plasticity perspective, a child has a greater opportunity for there to be the right ongoing development with appropriate treatment.
if I get diagnosed very early and I get on treatment that is going to allow for better control of my sleep, wake, my emotions, et cetera, then the plasticity that is supposed to be occurring in neurodevelopmental trajectory, that now is going to give me the wiring that maybe is creating more resilience.
Where on the other side, if [00:33:00] someone like myself at my age were to either be finally diagnosed or just have the new onset, there already is so much neurologic disability that occurs with that. We're unfortunately on the wrong side of the developmental phase, we're on the neurodegenerative side, so it's going to be a harder thing to recover from.
So I do think that there's, those biologic pieces, but then there are also, the social pieces. If I never knew if I was a child and I had a stroke at five years of age and I barely can make memories and I never knew what it was like to use my left arm. I'm just gonna be really good at using my right arm, and I'm not going to feel sorry for myself.
This is just who I am. Where if I am an adult and that happens to me, I now am going to have such a hyper fixation on that because it's so drastically different from everything that I've known leading up to that. And I will always enter into every moment with that mindset of I'm coming at it from a disability, the days when I could use both arms.
[00:34:00] similarly for a person who has narcolepsy, I think that those are different challenges. Now, with that said, do I think it's easier for either side? Absolutely not. Living with a chronic condition is never easy. However, does it become more manageable potentially? Does it just require maybe different resources to support and modify so that the optimal life can occur?
Yes. I think that that is very true. 
Okay. Yeah. 
Ann Marie: It's just always something I've wondered. I had done some consulting for the country of Ireland for several years related to the development of narcolepsy. there was a big increase in narcolepsy related to some.
Things that were provided medically in some European countries and in Scandinavian countries 
kerly: Vaccine. 
Ann Marie: And so with that, I had the privilege of being able to meet around 70 different families and understand what those journeys look like. From that point, have also been back to Ireland, was able to be a keynote speaker at narcolepsy, [00:35:00] Ireland's yearly activity, which was amazing activity.
Again, getting to meet many families. One of the things that was most horrifying to me is that in Ireland, it's a different educational process compared to what we see in the United States. So we do four years of high school, then you sit for your SATs, and then you can go to college 
what does the rest of your life look like? Even if I were to take several years off and return to school, that's still a possibility there was such a critical period between the mock cert ear and your leaving cert ear, and that leaving certification year was one that was so, so critical. Many times there just wasn't the right infrastructure that one year dictated the rest of some people's lives.
They were unable to get the right number of points and didn't have the ability to get the disability voucher it changed the trajectory of the rest of their lives. 
Mm-hmm. 
Ann Marie: What I would have hoped was increased awareness in that country.
Families reaching out to me through social media where their child is gonna be 16 in [00:36:00] October, and was diagnosed based on the testing, but was told you should wait until she turns 16 because then she can go to the adult clinic.
It'll be too complicate. Mm-hmm. It's your leaving cert ear. It's your leaving cert ear. Why is someone not looking at this like a medical emergency? It is a medical emergency not to allow someone to live a lesser life than what they're capable of. And I would challenge anyone who's in the healthcare system.
If you are not living with narcolepsy, I wanna know how many days, how many hours would you allow yourself or allow someone else. To let you live a life that is less of quality and less of capable of what you can actually do and achieve. And I guarantee you, there would not be a healthcare professional who would say even an hour would be allowed to go by with them being held down or held back by something that they could [00:37:00] overcome.
christine: It's Irish culture as well. We're just a different breed when it comes to illness. Like I only recently found out, my mom has a bad leg, but she was just making Christmas dinner. if someone has mental health issues, they have a bad case of the nerves.
You know, like someone's a rage and alcoholic, they like a drink, do you know? So it's just in terms of getting things recognized that are taken seriously. It's difficult and I'm in Northern Ireland, so my education system is similar to the uk. 
If you don't get your grades, then you don't get into university and it all just trickles through. I did a year in America where they were able to not major for a while and I was like, that's kind of cool. I had to just pick, they were like, oh, you're really good at English pick law.
And I'm like, okay. I didn't even like it. It's such a cultural thing. And then only a hundred people in Northern Ireland being actually officially diagnosed and then within Ireland, a few thousand overall. 
Mm-hmm. 
christine: It's, nothing when you compare the population size, so it's like.[00:38:00] 
Screaming into a vacuum, even trying to be like, do you know what this is? This is really serious. And people are like, ah, it's not that bad. And you're like, no, it's pretty bad. So yeah, it's definitely something that needs to be worked on. And a reason why I started speaking up a bit because I was like, this is ridiculous that no one knows what this is.
And I was just kinda angry about it. I was like, I should be transforming this anger into education because, there's no point being annoyed at someone who's just completely ignorant people often ask me, you know, what is it? And to explain it, and then I was just like, I should probably put an online platform which explains it for people and for families of people as well.
And just in a way that's like, can be translated to human interaction. Sometimes it's just something simple about how you're feeling.
If you could go back and give advice to yourself as you were just starting your advocacy journey, what would you say? Any tips for other people? 
Ann Marie: I would first say that I'm very [00:39:00] fortunate for all the things that have gone wrong in my life, because there's always something that I've learned and have grown from.
If there were a way to shortcut to getting where I am now, where I feel so comfortable. Being in a position of provoking controversy, provoking the idea that even though this is dogma, sometimes the dog needs to go out, what I would say to myself is similar to what I had described in my first entry is you're not an imposter.
You're a person going after what feels impossible to many. Remember what it states is I'm possible. To anyone on a journey, wanting to immerse themselves in advocacy, remember impossible is just saying, I am possible. Whatever it is that's your passion that you want others to recognize and reconcile.
It is possible. [00:40:00] It comes from within and others need to see that light that sometimes just needs further ignition. 
kerly: That's nice. , 
christine: every advocate has their own style. Some lead with data, others with empathy, and some mix them both. How would you describe your advocacy superpower and how has it helped you create change? 
Ann Marie: So I use empathy. I use data. I would say that my superpower and the basis of everything I do is communication.
communication necessitates at least two parties. And so whenever I am doing advocacy, I always am making sure that I'm having a consideration of the parties involved in order to affect change. If I only talk to my clinicians and the patients don't know that these are things that I'm telling them they should be doing and saying and [00:41:00] interacting, 
or if I'm only talking to patients and saying, I want you to advocate for yourself. I want you to use these words. I want you to keep these diaries and clinicians Dunno, and healthcare systems dunno. Then what we do is we drive. A greater degree of distance between those parties. And so I very much lean into this idea of communication and being very clear for both parties to being able to say, this is what I'm intending to communicate.
And being able to verify this is what I am listening to and what I'm responding to. Is that accurate? So really trying to boil down that no matter where you are on your journey with narcolepsy and whether it's that you're dealing with your sleep physician or your psychiatrist, or maybe your weight management doctor, that you are able to come from a position of power because you are an expert.
In your lived experience where I am an expert as a clinician in the [00:42:00] things that I've been taught medically around diagnoses, around treatments, around tests, but I am, a boldface liar. If I were to tell you that I'm more expert than you are in what you particular experience with narcolepsy looks like, and so being able to really leverage that 
Framing it around. Communication takes the emotion away from it. It takes the ego away from it. It takes the ability to acknowledge where there may be gaps, where there may be opportunities, and where partnership is necessary.
in any good partnership. The crux of building comes from really adequate, transparent communication. Otherwise, you'll never have trust, you'll never have respect, and you'll never achieve the outcomes you're hoping to achieve because you're not working as a team. 
christine: It's very, true.
When I had to deal with my health professionals, You have a certain mistrust because of being [00:43:00] missed. for years you can be in this mode of , like why did they not know?
then you realize in terms of education, my friend did medicine and she said we only did one lecture on sleep, and it was focused on respiratory. narcolepsy was mentioned like once, and then that was them. that was their fourth year.
And that's when I began to realize, we need, to flip this around, to educate people instead of just feeling misunderstood and attacked. if anyone was to. Wonder in terms of advocacy, sometimes you do feel like you're always going against misconceptions about what narcolepsy is.
Sure. How would you advise to tackle it in a way that encourages conversation about it? 
Sure. 
christine: Rather than the defensiveness 
Ann Marie: of alluded to in the past. Sure, sure. 
, I think it's a natural response to become defensive when you feel like you're being intact. And that attack sometimes [00:44:00] can be an outright, someone saying like, that doesn't happen, but other times it can just be invalidating.
Like, so you're telling me you really fall asleep? Like anytime you're just sitting here this whole time, I didn't see you fall asleep. so there's sometimes these different versions of it. And so I do think it's very appropriate for people to ask even simple questions.
How many individuals are under your care for the diagnosis of narcolepsy? How long have you been treating them? what other resources do you recommend I utilize to become more educated about my condition? Are there things that I can be helpful with in recording , for you to better understand what my lived experience looks like?
I encourage people to use a symptom diary and avoid things like a sleep diary or cataplexy diary alone, because that is one me saying that you know what all these things look like, right? And what you should be naming them, but also it may minimize that it's not so much the frequency, but the impact I wanna [00:45:00] understand.
Right. And so this empowers you to understand what your lived experience looks like because you actually have a pattern to look at. That also makes it harder for someone else to invalidate your lived experience when you're bringing to them a recording I am identifying this trend where every day around noon, I cannot keep my eyes open.
I cannot keep my head up. And I find that because of that, I'm avoiding eating lunch. I get a headache every day afterwards because I didn't eat lunch. And the reason that becomes really powerful, it doesn't matter where you are in your journey.
If you're the person who hasn't been diagnosed yet, this can be helpful for somebody being like, oh my goodness, I've seen another patient who has the same story. And when I look at this pattern, this looks like narcolepsy. It can also help the person who is on the treatment journey or already diagnosed and they're treating doctors like, we're gonna have to change your modafinil.
That clearly is giving you the headache. You take the Modafinil every day. no, no, no. It's not [00:46:00] the modafinil. It is the fact that I'm not eating. So it empowers the individual to make their own personal changes, use behavioral and lifestyle changes that you are fully capable of without the permission of a doctor.
But it also 
Ann Marie: allows you to engage your doctor in a meaningful way to say, I understand where your expertise may be. However, I need you to use that expertise to meet me where I'm living. this becomes true whether you're dealing with a clinician who is. experienced with the diagnosis of narcolepsy or one who's not, because the risk is the same in both circumstance.
You run the risk of someone who is very experienced to say, I know better than you what living with narcolepsy looks like. And that's not true unless they themselves are also living with narcolepsy, 
I don't think that can happen. what I learned about narcolepsy is you should fall on the ground when I make you laugh and you're not falling on the ground. Or you should fall asleep with your face in soup and you didn't tell me that you do that, , so the fact that you're fighting enough, [00:47:00] that tells me you probably just aren't sleeping enough. 
Being able to also understand. That utilizing other resources to support what your experience is. not only you giving your own description of your resource, but going to Google. I tell people all the time, don't fall prey to a physician who says, don't mistake your Google search with my doctoral degree.
Ann Marie: That's a physician who has an insecurity about what they may know and think they know more than Google, and that's just wrong. But the reality is that I would much rather a patient who continues to self-educate and bring back to me what they've learned so we can digest that together 
Is that applicable? Is it not applicable? But it does allow for you now to have further information. There's so many great resources that are available online that can really help in validating what you're experiencing. And the same as what you have done, Christine, by going to the internet and, really blogging about what you're lived experiences, exactly what people need.
We see that in the US all the time with things like Reddit [00:48:00] Instagram or Facebook, that people come to , the clinician because they go, I saw five different people on this online chat, and I have what they have. That sometimes is helpful. You read Julie Fly's book Wide Awaken Dreaming. 
It was a physical therapist , who put the word cataplexy to what she was experiencing with her knees buckling. When she looked up cataplexy, she had this aha moment of like, this is the thing that I have because I do these other things too. And so it is this experience that I do think sometimes allows for you to synthesize. 
And what I would just say to people is sometimes you need to give clinicians grace. we should be like, they should be held to a higher standard. You know what, that's what we're trained. We're trained to believe we have to be held to a higher standard and have the right answer all the time.
Ann Marie: we have such an insecurity, especially with a diagnosis like narcolepsy, where it feels so invisible and where the testing isn't absolute. if you don't fit this nice box, there's more of a [00:49:00] fear of us applying the wrong term. Then for us to invalidate what, what it is that you're telling.
And so you sometimes need to give the clinician grace , and really encourage them that I want to develop a partnership to achieve the best outcomes and that we're looking to partner not for you to solve my problems. Clinicians sometimes have this false thought that we are gonna solve everyone's problems.
We can't, we don't live with you day to day. We can only provide you options and encouragement for you to be the most optimal that you're able to be. 
christine: Yeah. It's, it's only when my friend when through medical school that I was able to see it from a different perspective. She was able to say this is what we're taught and we're expected, to know everything 
They're actually not really that educated. And then that made me realize from a more. Sympathetic point of view 
mm-hmm. 
christine: Anything could be presented to them some days, especially here for gps, she's like, [00:50:00] anything could come in the door. She was like, I really prefer a hospital department than sometimes being in general because it could be anything It's definitely, difficult. Yeah. I can see it from the point of view and then that's why it's like, well, how do you solve that? You can't just merge into the medical school and be like, you need to know this. But then advocacy could maybe pa pave away to that as well. That's where my maybe imposter syndrome comes in.
I'm like, who would I be to tell doctors more about narcolepsy? But then when you look at what they're teaching them, you're like, they're not. Actually telling them anything about it, 
Ann Marie: You are expert in what it is to live with narcolepsy.
The person who's teaching my medical students and residents about narcolepsy, I'm an expert based on a medical capacity, not what it's like to live with a disorder. And so I cannot give them the nuance of what it's like every single day and how you've experienced disability.
I can report to them what I've heard, but it is a very different and powerful thing for people to use their own stories to educate [00:51:00] and motivate to make the changes that are necessary. 
kerly: That's a very good point. I always say there's a Caribbean African sense where. Certain professions are deemed extremely important and very high. You should push your children to go towards. So if you're sitting in front of someone who has that profession, you should be very respectful 
mm-hmm.
kerly: Anything they say should go, because, they studied really hard to get there how dare you, question them I had the opposite of that because I was going into seeing clinicians without my parent. Quite early on.
I was like, no, no. Doctor is a God. So I'm gonna ask lots of questions. Sometimes they get very irritated, like, Why do you need to ask more I always say to them, you did go to school to learn these things.
Every so often, you'll get a patient that is different and you should see this as a nice challenge because you're not gonna get all patients like this every day. You use all those skills that they taught you in school to figure out this puzzle. 
And if it's got to the [00:52:00] point where I'm coming to you for help, I'm also trying to figure the puzzle out as well. So let's try to, put the pieces of the puzzle together. 
Ann Marie: I see you once every six months. I need to be well prepared to navigate the next six months without you.
sending me out with just what you think I need to know versus what I feel like I need to know to be successful might be two different things. the responsibility for us to have a successful relationship is for you to help me fill those gaps. if it's not you, then direct me to the resources.
For the same reason as to why it's wrong for doctors to say, don't mistake your Google search with my doctoral degree don't think that because you have a doctoral degree that you're fully capable of being an encyclopedia of medicine that is gonna answer every single question, all the questions at all the times that the individual has them.
if you wanna do that, be fully prepared for messages to come in 24 7, 365 days a year, and have a methodology to respond in a timely fashion that isn't gonna compromise the quality of life or function for someone else. [00:53:00] The reminder that clinicians need to have is that we take the Hippocratic oath to first do no harm.
That includes the purposeful withholding of information that is necessary for individuals to live most successfully. Just absolutely unrealistic for clinicians to be able to deliver on all that. this is where clinicians need to lean into advocacy organizations to say, this is an extension of what great care should look like.
Peer support has been demonstrated to being extraordinarily and effective means of helping people to live more optimally with chronic disease. This has been demonstrated repeatedly in the mental health arena. Julie Flagger and Project Sleep, I was very happy to be a part of this effort.
We just had a publication on being able to understand what that peer support looks like, and there was really some challenging data that we've identified. these were individuals coming in through an advocacy organization and we asked, [00:54:00] when you were diagnosed did you know anyone else who had a diagnosis like this?
It was 97%. Did not know anyone else. And at the time of completing that, we said, do you know anyone else who has a diagnosis like yours? more than a third said, they still did not know someone else that had the same condition. that is such a lonely experience. to try to figure out how to be able to live everyday successfully on your own.
it is setting you up for failure. if the only person that is giving me that information as a clinician I'm seeing every six months, that's leaving me vulnerable to losing years of my life, to inadequate treatment, to inadequate goal setting, to inadequate journey that is going to only further delay me and create a greater degree of disability.
kerly: Yeah. 
Yeah. 
kerly: I think that's another reason why the podcast, and what you said about peer support groups is so important. a lot [00:55:00] of time I meet people and they've finally started to talk to other people who have the illness. They'll say, they didn't say this in the pamphlet.
When I went to the doctor, they didn't tell me this I didn't know that was another symptom. How come they don't put it in the pamphlet? I thought I was crazy for so many years how come all of you are having the same thing as me and living in different countries?
That can't be a coincidence. 
Ann Marie: what you've identified is a major call to action where globalization is necessary for there to be positive traction. we're sitting here from three different demographics and sharing the same experience there.
There's grave misperceptions, there's major delays, there's ongoing disability that's perpetuated by a lack of education and advocacy. it's not because people aren't trying. we have pockets of people making local movement, but we need global traction.
In order to elevate a voice that cannot be ignored. And that is really what the demand is, is that although it is characterized as a rare [00:56:00] disease, it is very commonly in pairing. Thousands to millions of people globally. And that is something that we really do need to say. How do we get those strength in numbers so that irrespective of what language you're speaking, we're all understanding where we are and where we wanna go.
 
christine: yeah, makes sense. Definitely. Because even here in Northern Ireland, I feel like a tiny dot, and then when you connect, the first person I discovered was Julie Flagger and I read her book and I was the project sleep.
And you're like, wow, look what they're doing. being able to learn from the resources she was putting out and the people she was interviewing As Carly said earlier, over here there's nothing. So we're like, there has to be something created here to support people suffering from narcolepsy as you said about that project with young people and their lives it has a huge [00:57:00] effect on your sense of identity and what you think you're capable of. it's crucial. 
Ann Marie: I think to your point, when you're saying that it's someone's identity, it's not uncommon.
I see this both with young women and young men when they're trying to get into the arena of dating and intimacy, there's this whole, imposter syndrome of when should I disclose that I have this condition? I don't want them to think I don't like them because I'm canceling on our date.
Or what if I fall asleep when we're having sex? Or what if I have cataplexy there's all of this psychological warfare that is occurring in someone's mind with the anticipation of the what ifs. being able to socially dissect with other individuals. How did you navigate this?
How did you disclose this? How did you disclose it to your employer? How did you disclose it to your friends? How did you disclose it to someone you're dating? Is there a right way? Is there a wrong way? Are there red flags that the way someone responds that you should be running through the hills or [00:58:00] marry me now?
I think that's important. And again, it's a reflection of emotional intelligence I have this self-awareness, this self-management, but then there's this social awareness and social management many times people living with chronic disease. start to accept a lesser version of what is socially acceptable because they almost feel privileged that other people are, are quote unquote accepting them a part of their circle.
They're not accepting you as part of your circle if you feel like you're privileged, that they're letting you spend time. That is, those concerns where it is a matter of us building you up to understand that those people should feel privileged to be a part of your circle, and you are giving them something very precious to you, which is time.
christine: That's really true. And it's actually a conversation I had with my sister on Friday, I used to be this little people pleaser and social and go out. But I realized once [00:59:00] I had to insert my needs, some people are just not great at accommodating that.
I really like this person as a friend, but My narcolepsy was worse because they didn't understand that I couldn't do the same as them. if we were out on a night out the next day, I was totally exhausted.
I couldn't do midweek drinks. It just wasn't a, it was, and especially Irish culture, yes. It's like everything is surrounded by going out for drinks at the weekend. We're going out, we're gonna, the bars, we're gonna the clubs and that. Now I'm like, in a social aspect is difficult because then you kind of find yourself, you're like, I could do like once a month and I take about two days to recover.
everything now for me has to be planned. But it took a long time for me to be like, it's okay to say no. It's okay to take care of my energy because when I'm sitting on Monday morning at work, exhausted, really struggling to stay awake, those people [01:00:00] aren't there to pick up whenever I am totally drained.
So it's really a journey of trying to find your people then. And it's strange because you thought before narcolepsy that these people were your people, but then you realize when you've limited energy that they don't have a lot of time for that, or they just don't understand no matter how many times you explain.
And that's another thing I say to people, obviously educate people, but if someone doesn't wanna listen, don't exhaust yourself explaining to someone that just has glue in their ears. they just don't wanna listen. And it's a waste of your time. Just walk away. And that's hard.
it's hard if it's family or something like that, it's difficult for people to navigate. Definitely. Do you agree, Kerly ? 
kerly: Yeah, I had to learn. quickly. time is so precious and that time is equal to my energy.
I get very frustrated if you've wasted my time unnecessarily. I just feel such disrespect for that. I just think, oh my gosh, [01:01:00] you know what I could have done with that time? How I could have used that time to do some activity in the house or something that really needed doing that I would've been putting off.
And I gave that to you and then it was just a waste. 
Ann Marie: Yeah. 
christine: So how do we get the working world, for example, to take sleeper seriously?
Because I feel like with advocacy, a lot of it is like, money kind of makes the world go round, people can get suspicious when they think oh they're just trying to ask for this, and my productivity is gonna be affected and we're gonna lose money.
But I feel like businesses, if they can understand. Then the world could change, you see it, for example, like lorry drivers they're not meant to be doing so many hours driving, But they have zero hour contracts, so they have to, 
I always struggle with how we're ever gonna get the world to listen. 
Ann Marie: What I would [01:02:00] say is that as opposed to zeroing in on any one specific sleep disorder because then it becomes the battle of which sleep disorder should they listen to when you come from a place of rare disease, people self-select to shutting off.
What I would start with is that if money is what matters, $400 billion a year is lost in workplace due to sleep disorders. If you care about your employees showing up for work, physically, showing up to work, mentally having risk mitigation for injury at the workplace, missing work because of other illnesses due to an unrecognized sleep disorder, that's the first place to start.
If you're worried about the culture and wellness. Of your employees and of your business, and you wanna ensure that you are retaining your employees. It's important to recognize this. An unrecognized sleep disorder is only gonna drive the likelihood of burnout. People being unsatisfied with their current position, always thinking they're being.
Overworked and [01:03:00] undercompensated, and it's going to drive more drama in the workplace. if you want to positively impact your bottom line as an employer, let's talk about sleep. Because sleep and circadian science has a very, very high relevance to how profitable you're going to be as a business.
And if you are okay with losing $400 billion a year due to your own ignorance, then let's go. However, if you wanna make the fiscal moves to be a financially healthy environment that is going to have a greater degree of profit, is going to have employees who are going to gladly show up your job and contribute 100%.
Let's talk about treating the whole person and making sure that we're not just. Singling out anyone's sleep disorder, but making a greater degree of awareness of how when you optimize sleep and circadian health, you're optimizing the person to be the best version of who they can be, which is gonna provide you the best product and service in your institution.
christine: Yeah, I think that's [01:04:00] definitely research that needs, put in the front because there is definitely I worked in a big four accountancy and there is all this wellness budget stuff where they're like, here's the training, here's percentage of this. 
Ann Marie: here's some yoga and some cookies.
Look at how well our employees are. but that's not gonna fix. 
christine: Yeah, when it comes to walk the walk, it's a completely different story. I have friends still in the industry and I'm like, how is it now? it's a bit better, but until the people that think you have to be at your desk nine to five, like chain to it.
Mm-hmm. Until they phase out. It's, it's this awkward InBetween where our generation will be like, we are still productive. flexibility works, but in practice it's difficult it's gonna be a while, before they fully embrace it. 
Ann Marie: Yeah. Well, I think, this is where it comes back to having a globalization of a voice and everyone's having the same story.
the challenge that exists currently, and this is true just in the [01:05:00] sleep world, is that you have one group who's going sleep disorder, breathing. It's so important. It does all these bad things. Someone else going, Insomnia. And then someone else going restless leg syndrome. And then there's narcos.
the reality is that the commonality across all of these is that when you have sleep or circadian dysfunction, You're gonna end up with worse outcomes. And so it's less important for me to zero in on the particular disorder to start with. 
It is 
Ann Marie: more important to be able to globalize if these are your goals as a business, high productivity, good mood, healthy employees getting on time to having all the things done that you want.
This is a tool. You can utilize that is not gonna require longer days. In fact, you're gonna find that time management is improved by being able to encourage and look at the full 24 hours and optimize that when we start moving away, [01:06:00] it sounds backwards to say, from saying, look over here, look over here, 
When you do that, people become fatigued by it. They become desensitized and they go, this is too confusing to figure out. People shouldn't be sleeping at work anyway, so it's not really our problem. When you're able to step back and go, why are we continuing to separate out sleep and wake when this is a part of the same full 24 hours and have high implications on one another?
Let's talk about why this is relevant to the workplace, to the school setting, to whatever it is that you wanna talk about. It is a part of how we can optimize your performance in any of those arenas. 
kerly: we have to get to the point where people respect sleep and think of sleep as they think of water, that we really need it.
for someone living with five sleeping disorders, I would say It's the sleep health that is the most important thing. Once we get people on board with that, everything else will trickle down. they got to [01:07:00] believe, and I think that's the problem.
The world does not believe enough that sleep is important, that sleep is as important as it is. 
Ann Marie: We've entered into the mentality of, I'll sleep when I'm dead and I can get away with less sleep. when people tell me I'll sleep when I'm dead, I generally respond with, you're just gonna get there a lot sooner.
I do think that, Work like you're doing many advocacy organizations are doing are gonna start moving us in that right direction. I think one of the things I'm really excited about is in 2025 I have purposeful plans of how to align across the pond of so between the US with Canada, with some of the European nations.
How do we start aligning efforts. So that we're all sharing the same story this makes it harder for people to ignore the relevance is and really starting by incorporating some of the other orgs that aren't a sleep first organization. Looking at the oncology organizations, the cardiovascular organizations, sleep is a [01:08:00] tool to potentially prevent cancer.
help in the treatment of cancer, to help with the quality of life of cancer. The same thing can be true in cardiology, neurology, endocrinology, you name it. You look at this current state in the United States where 75% of adults are overweight or obese, sleep and circadian science has a significant implication there.
And so when we're talking about what are the tools in our tool belt, why would we not take advantage of all of the things that don't have a side effect? Being able to optimize your sleep and circadian health has zero side effects. Other than if you view a more optimal version of your mood, your personality, your health as being a side effect, well then this is just not the right world for you to be living in.
christine: Yeah, sleep is crucial for everyone. even people that speak to me, new parents, they'd be like, how do you deal with being sleep deprived? it's all like, just different [01:09:00] stages of having their newborn and stuff. They're like, I dunno how you do this all the time.
you can't bite everyone's head off or you wouldn't have any friends. agreed, agreed. 
kerly: No, this has been really lovely. I've learned so many things and there are so many bite-sized things that I thought, oh, I could put that on my wall and I could put that on my wall.
 
christine: Wall.
Awesome. 
Ann Marie: Well, I appreciate you guys taking the time to share with me. I look forward to continuing to grow the efforts of collaboration with you Based on the conversations we've had today, there is a lot of work to do. However I'm ready to roll up my sleeves and get my team behind me because I do think this is a meaningful effort 
there are many who are going at this alone and I think the more that we can pull everyone together, the more that we are growing a community to be able to live life most successfully. [01:10:00] 
Thank you very much. Thank
kerly: we usually end with happy napping, so we'll say happy napping after three.
1, 2, 3. Happy napping. Happy napping. 
Ann Marie: Love it.