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On the WorkWell Podcast, Jen Fisher — Human Sustainability Leader at Deloitte and Editor-at-Large, Human Sustainability at Thrive Global — sits down with inspiring individuals for wide-ranging conversations about how we can develop a way of living and working built on human sustainability, starting with ourselves.
Jen Fisher (Jen): Hi WorkWell listeners. I’m really excited to share that my book Work Better Together is
officially out. Conversations with WorkWell guests and feedback from listeners like you inspired this
book. It’s all about how to create a more human-centered workplace, and as we return to the office for
many of us, this book can help you move forward into post-pandemic life with strategies and tools to
strengthen your relationships and focus on your well-being. It’s available now from your favorite book
retailer.
Sleep is essential to our health and well-being, but according to the National Institutes of Health, an
estimated 50 to 70 million Americans have chronic or ongoing sleep disorders. Additionally, sleep
disorders are often difficult to diagnose. With over 80 different sleep disorders in existence, it’s
important that we all increase our sleep education and build more awareness in our communities.
This is the WorkWell podcast series. Hi, I’m Jen Fisher, Chief Well-being Officer for Deloitte, and I’m so
pleased to be with you today to talk about all things well-being.
I’m here with Lindsay Scola. She’s a writer, producer, public speaker, and impact strategist. After
experiencing symptoms for decades, Lindsay was diagnosed with narcolepsy. Since then, she’s become
passionate about expanding conversations around patient advocacy and sleep disorders. Lindsay is also
part of the Rising Voices of Narcolepsy program at Project Sleep, a nonprofit organization dedicated to
raising awareness about sleep health, sleep equity, and sleep disorders.
Lindsay, welcome to the show.
Lindsay Scola (“Lindsay”): Thank you so much for having me.
Jen: Yeah, I’ve been long awaiting this conversation, so I’m really excited, but I want the listeners to
learn a little bit about you, who you are, and why you do what you do, and a little bit about your story.
We’ll dig into that, but how do you like to introduce yourself?
Lindsay: So my name is Lindsay Scola. I’m a speaker, writer, producer, and strategist. I like to lead from
this place of a nexus of entertainment and political change, so using my background, working in politics
and government for a long time, and then coming into entertainment to think about how we talk about
things differently, and for me, that’s sleep disorders, particularly narcolepsy. I was diagnosed at 35 after
having symptoms for 20 years and have spent the last five years figuring out how I live a better life with
narcolepsy, but also how the next person doesn’t go 20 years without getting a diagnosis.
Jen: Yeah, I mean, let’s dig into that, right? Like, first of all, I think demystify narcolepsy for us because
there’s probably a lot of thoughts and myths or beliefs out there about what narcolepsy is or maybe
what it isn’t. So can you tell us about narcolepsy, what it is, and then also, how common is it?
Lindsay: So when I was diagnosed with narcolepsy, my doctor tells me this, and I cock my head to the
side and say I don’t think you’re right because I’ve never fallen asleep into a bowl of soup because, for
me, I thought narcolepsy was someone who just fell asleep while they were talking or standing up and
fell over, and that’s absolutely not the case. It’s a disorder of the sleep-wake cycle. So your brain is often
confused about when you’re supposed to be asleep and when you’re supposed to be awake. So for most
people, this shows up as something called extreme daytime sleepiness, which can be anything from right
after you wake up, no matter how restful your night sleep was, feeling like you’ve been awake for 48 to
72 hours. You have something called sleep attacks where you’re feeling okay and you’re concentrating,
you’re not feeling particularly tired, and then out of nowhere, sleep consumes you and you feel
extraordinarily heavy and feel like if I don’t go to sleep right now, I’m going to die, call this as sleep
attack. It’s also hypnagogic hallucinations, which is a hallucination, either right as you’re falling asleep or
right as you’re waking up, and this can be something that you see in a room, it could be something that
you hear or something that you feel. This can be coupled with sleep paralysis, which anybody has the
possibility of feeling, and that’s when you’re in a dream and you can’t run, you can’t scream. People
with narcolepsy have this more often than others, and it’s usually you’re in the surroundings where
you’re sleeping and you’re in between sleep and awake, and so you can be having a hallucination that
something is in the room and you can’t get away from it and you can’t scream. And then, there’s
cataplexy, which is a loss of muscle tone, when you’re experiencing some sort of strong emotion. And so
for someone like me, it’s really subtle. It’s in my face. Either my lip droops a little bit or an eye drops, but
it can be anything to completely falling over like a marionette doll. Not everyone with narcolepsy has
this, but it is a symptom for some people.
Jen: And so how common is this? And maybe that’s not the right question because I gain from what
you’re saying and your own story that I’m aware of is that it doesn’t get diagnosed as quickly as it
should.
Lindsay: Absolutely. So from what we know, narcolepsy should be about 1 in 2,000 people, but it’s
diagnosed and people receiving treatment at around 25%. So there’s 75% of people with narcolepsy out
there that don’t know that their tired is different from everybody else’s.
Jen: So tell me about like that period of time, which was a long time before your diagnosis, and like what
was going on with you? You clearly knew that there is something wrong.
Lindsay: I specifically remember around 16 or 17 telling my doctor that I felt extraordinarily tired. I was
having those sleep attacks that we talked about. I was in a summer class and would just get these
moments where I painfully had to go to sleep. I didn’t want to do this in class, it was a college-level class
at a university, and I was in high school and I didn’t want to be that person laying sleeping at my desk
and was going into the restroom and taking short naps. And when I talked to my doctor about this, she
told me that busy people are tired and I was a busy person and the whole layer on that that teenagers
tend to be more tired anyway, and sort of this wasn’t something that I should be worrying about. And
throughout my late teenage years, these things sort of continued. My dad was a private pilot, and one
time we were taking off in a pretty heavy windstorm and he was practicing takeoffs and landings. And as
we would come base to final on each loop, he would wake me up. In the event that we crashed, I could
get out of the plane, and then, as soon as we touched down, I’d fall asleep again, which we all should
have seen was not normal. He just thought I was really, really comfortable with his flying skills and
appreciated the confidence. And these things would continue, and so the thing about a lot of conditions
like this is it ebbs and flows. It is worse in some periods than it is in others, and I’ve even seen that after
my diagnosis, but you sort of push during the bad periods. You don’t get an answer. You get gaslit from
yourself and your peers and your doctors, and you take a step back.
And for me, I worked in politics, and so I was moving all the time. So every time the bad period would
come, I had a different doctor, and I was completely starting over. So you get that sleep hygiene
checklist. I mean I was working on campaigns. I could not do everything on that list perfectly. So there’s
always something that came back to me from the doctor of, “well, you’re not doing this.” I had one
doctor who was just really certain that because I liked using my laptop in bed that this was causing all of
my problems. I was never in a place in my life or career where I could do 100% of those things they say
to do to get good sleep. So it usually came back on me that I had this high stress, high-paced life and was
sort of causing this for myself. Then you get into this moment of feeling like you’re a failure because
everyone else around me was working in this high-paced, high stress life and people talk about being
tired all the time. And of course, you’re going to be tired. There’s days where you work 20 hours. Who
wouldn’t be tired?
So I didn’t understand that my tired was different from everyone around me, and these things come up
where I was backstage, I was an advance person for President Obama in the 2008 presidential race. And
I was on the phone with my boss asking if I could not travel that night because I was so tired I couldn’t
raise my arms. Now it should have been a trigger for everyone. Fatigue should not be physical. And I was
in this place where I just couldn’t understand why I wasn’t keeping up with everyone, and then things
would happen with fractured sleep where I could fall asleep just fine, but then I would wake up at 3:00
o’clock in the morning and be awake for two, three, four hours and maybe fall asleep 15 minutes before
I had to wake up to go to work, which is also a symptom of narcolepsy, but when you tell people or
specifically your doctor about your job, they just point again to stress, “Stress can keep you awake at
night. You’re traveling a lot. So maybe you’re waking up on a different time zone.” And a doctor was
fairly certain, “Well, if you are waking up at 3:00 o’clock in the morning on the West Coast, you had
been waking up at 6:00 o’clock in the morning on the East Coast, your body just isn’t adjusting.” And
then when I was just over 30, I started feeling like I was moving through life under a weighted blanket.
Something was really feeling off for me, and I remember sitting at dinner with a girlfriend and finally
feeling the courage to say I think something is wrong because before that, you don’t want people to
think you can’t keep up, so you keep this inside. And maybe you’ll talk to the doctor about it. Maybe
you’ll talk to a family member, but talking to a colleague of mine and a friend like I got the courage to
say something and she had a four-month old who was in sleep progression and she was like, “Oh, you
have no idea what tired is.” So it was this thing where I was like, alright, the doctors have told me that
nothing is wrong with me. Now friends are telling me there’s nothing wrong with me. This is clearly in
my head.
I finally got to this place when I was 35, where I was having these sleep attacks almost daily. I was
sleeping in the bathroom at work. My office was also attached to a theater and had these deep wells in
between the seats on the concrete floor where I felt like I could sleep and no one would see me. And I
was operating like a lunatic zombie. I had a zero control over my emotions. I was so exhausted that if I
could get into clothes and into my office that day, it was a victory. I was doing a lot of automatic
behavior where I was driving and taking sort of micro naps and not able to remember what exit I was
supposed to be getting off of, would fall asleep for a second writing an e-mail and have some like
gibberish in the middle of a sentence and keep going and then send it. And so, I go to my doctor. I say
please, please, please do something. She gives me a sleep study for sleep apnea. It comes back and says
that it’s negative because I don’t have sleep apnea. And she tells me everything’s fine. And at this point,
I am apoplectic. I go home, eat an entire pint of Ben & Jerry’s and a bottle of red wine, and I find the end
of the Internet and find that the home sleep studies that they give you for sleep apnea were invented by
the VA as a low-cost alternative for overweight middle-aged men. I was like, alright, this is not me. I
could still maybe have sleep apnea, give me something else. So I go in with this whole dissertation and
she stops me midway and says we’re now beyond both of our education on sleep, and I will send you to
a sleep specialist, but I had to have a meltdown on the floor of my doctor’s office literally kicking and
screaming like a toddler to get to a level of care where someone was finally able to diagnose me with
what I had.
Jen: That’s a lot. Take us through the rest of the story all the way through diagnosis.
Lindsay: So mind you, I said the lunatic zombie thing. So I get to the sleep specialist and was not able to
have a conversation with him that didn’t turn into like ugly cry, breathe into a paper bag type of
conversation within like 30 seconds of us starting to talk. I’m insisting to him at this point I have sleep
apnea and he’s like I’m looking at this, I don’t think you do. So he let me take a hospital sleep study that
week so that we could prove I didn’t have sleep apnea, but in order to do the neurological exam for
narcolepsy, they look for several different things. So they were never saying narcolepsy to me at this
point. We were doing a neurological exam to see if it was something else. You have to go off
antidepressants because antidepressants can change your sleep architecture for them not to necessarily
be able to see what they’re looking for with this neurological exam, which in the case of narcolepsy,
they’re looking at how fast you go to sleep and how quickly you go into REM sleep. Now I thought that
my antidepressant was the thing that was holding me together and was sure the minute they took this
out of my body, I was just going to unravel into a million pieces and potentially on the floor of my office.
So this was a particularly dark time in this moment where I’m trying to titrate off of my antidepressant
medication. I am exhausted and again have zero control over my emotions, but I got there, did the sleep
study. They give you a series of these naps. They sent me home faster than the final one, so I probably
should have known at that point, but I’m very good at compartmentalizing. My fastest nap was in 59
seconds and fell into REM sleep in all of my naps, and about two weeks later, got my results back and
was really dumbfounded, and I’m someone who has always been an open book. I like to talk about all of
my feelings as I’m feeling them, much to my partner’s enjoyment, but the first thing I said to him when I
called him after my appointment was I don’t want anyone to know because I was so afraid that people
were going to think that I couldn’t cut it and I wasn’t working in politics anymore at this point. I was
working in publicity and the number of 4:00 AM emergencies on this are not many, but I didn’t want
people to think I was that person that was going to fall asleep into my soup, and that was a very dark
and lonely period for me because I’m an autoimmune collector. Some people collect records or Hummel
figurines. I collect autoimmune disorders, and when I got diagnosed with Hashimoto’s hypothyroidism
when I was 24. I cried for a morning that I was going to have to take a pill every day for the rest of my
life and pretty quickly learned that I take that pill and I never have to think about my thyroid. For the
most part, that’s been right. When I was 27, I got diagnosed with celiac disease, outside of an epic
meltdown on the phone with my mother that I would never eat my own wedding cake to the fact that
she was way more concerned that I was going to find someone to marry. She just let me cry that one
out. I found a bakery that afternoon and found out that as long as I don’t put gluten in my mouth, I don’t
have to think about celiac. And then narcolepsy came, and I was like, all right, I’m going to find the pill
that makes me again, and then I never have to think about narcolepsy. And then you find out that with
narcolepsy, you don’t get better, you just get better at having narcolepsy. And so being in this incredibly
lonely place of not feeling like I could talk about this, not wanting people to know I was going through
this, and then not having a novel treatment. There is a specific thing I can take for my thyroid that’s
under active that makes more of what my thyroid should be making and it takes care of that problem.
You don’t have that for narcolepsy at this point. So you take medication that you can that is going to
ease some of your symptoms, and hopefully, it doesn’t give you more side effects that outweigh that
and something can work for a little while and then completely stop or it does the complete opposite of
what you were looking for. So five years into my diagnosis, I am on my 14th combination of medications,
and the biggest thing that I’ve done, in addition to those medications, though, is talk about this because
the more we can have these conversations and the more other people can realize that they’re not alone
in this or hear that maybe their tired is different when everyone around them is tired, the better we can
all feel about this down the road.
Jen: Well, thank you for doing that. How did you make that decision to go from never wanting anyone to
know to now being such a vocal and important voice for narcolepsy, but just sleep disorders in general?
Lindsay: Well, for me, the pandemic was a huge piece of this. I had been in a hamster wheel my entire
adult life, as most of us are, and when I got the diagnosis, all I wanted was that pill that was going to
make me not tired and really never got there. And so something happens with this pill, you layer in
another pill. That pill goes away, you take this pill. And I got to this point where I really couldn’t feel
myself. I didn’t know what my baseline for my body was. So when the pandemic came along and I was
able to work from home and had that flexibility to nap when I needed to nap and shift my hours around
if I needed to do that, I was able to go off all of my narcolepsy medications so that I could hear my body,
figure out what my baseline was, and then be a little bit more thoughtful as I added those medications
back in because there was some stuff that, like a pill was causing this side effect, but because I took only
the other pill out, I didn’t know that it was coming from that one. So it was so good for me to like get
that baseline and figure out where I was in this combination, but in doing that, sort of connected with
my brain. And for me, my whole career had been in politics and advocacy and serving other people, how
do we make the world a better place, and what was missing for me in this was how do I make sure that
the next person doesn’t go for 20 years and had to make a decision. And thankfully, at this point, I had
also gone out on my own. I have a consultancy. I’m my own boss. My clients are aware of my condition,
and I don’t feel like I’m going to lose opportunities or have a boss judge me in a way that if I am vocal
about this that that’s going to blow up for me. So all of those things kind of came together and deciding
that I was going to be a more vocal participant in this conversation. And it’s been extraordinary for my
mental health because it’s made all the pieces fit together of who I was authentically, but taking
advantage of my privilege of the type of job that I have that I can be vocal, which has been particularly
important for me recently, for those of us who take stimulants to manage narcolepsy, that there’s a
stimulant shortage right now. And if I was a doctor or working retail or somebody who needed to drive a
vehicle regularly for work and was caught up in this, then I wouldn’t be able to talk out the same way
that I can. And I feel like it is my responsibility as someone who has that flexibility in my work and my
position to be a voice for the people who can’t be a voice on this right now, and extraordinarily grateful
to be in that position.
Jen: What has the response been like?
Lindsay: The response has really been incredible because some of the notes that I’ve seen of people
feeling like they’re not anxious people, and this happens a lot for people who have been diagnosed with
narcolepsy, is that most of us were misdiagnosed with anxiety and depression. And then, as soon as we
got our narcolepsy symptoms managed, the anxiety and the depression went away, and cycling through
all sorts of different antianxiety or antidepressant medication, especially for me, it would make some of
the anxiety symptoms go away, but it didn’t make the reasons that they were happening go away. And
what I’m hearing from people with narcolepsy or similar conditions that take these stimulants is that
their anxiety is through the roof right now because you spend a week panicking that the prescription
coming in the next week isn’t going to come and then you find out if your pharmacy is going to be able
to fill your prescription or not. And usually when it’s not, you have to find another pharmacy that can do
it, and then you have to get a new prescription from your doctor to the new pharmacy, and then you
have a period where you’re either unmedicated or you’re scrambling to get the medication from a
pharmacy that could be an hour or two hours away from you. And then you come back into a medicated
place where you’re wildly behind because of the anxiety leading up to it and the time off medication.
And mostly hearing from people about how high their anxiety is around this and that they can’t do
anything about it, and that makes their anxiety even worse. So it’s been it’s been nice to get that
feedback. It’s also been nice to have this as an opportunity for people to understand what these sleep
disorders are in the first place.
Jen: Yeah, I mean I’m hanging on every word that you’re saying because I just think that what you’re
doing, the work you’re doing, what you’re putting out into the world for people that have narcolepsy
and similar disorders, but just for everyone, the power in your story and the education in your story for
us all to learn more and understand is so important. And I want to shift a little bit to just talk about kind
of sleep in general because if I rewind five or six years ago, I actually think it still exists in many cases,
especially in the world of work, the conversation around sleep and this notion of “I’ll sleep when I’m
dead” or “I only need three hours of sleep” or “I only need this.” So all these kind of misconceptions.
There is more of a conversation around the importance of sleep, but is that conversation, in your mind,
helping create more of an understanding around sleep disorders or like, where do you see that being
like right now and how is that evolving, in your mind, or how should it evolve, in your mind?
Lindsay: Well, I’m very happy that we are no longer talking about how super-successful people only
sleep four hours a night. There was that conversation all through the 1990s and the early 2000s, and I
feel like it’s been great to get to this place where people are saying sleep is important, but they’re saying
sleep is important and you should sleep eight hours. Sleep is a bell curve, so that means that there are
some people who can sleep four hours and that’s what their body needs, but there’s also people who
need 12 hours of sleep, and so eight hours is only the top of the bell curve. So instead of telling people
that they need to sleep what’s best for their body, we tell them to set a different goal marker. So
instead of saying you only need four hours of sleep if you’re going to be highly successful, we tell them
now that you need to sleep eight hours, so it’s another thing for you to think you’re failing on. So the
people who need less than that think they’re failing by not getting to that eight-hour mark and the
people who need more than that think they’re failing because they need more than that eight-hour
mark. And So what happens in that conversation is it’s another thing like the sleep hygiene handout.
And I’m not knocking the sleep hygiene handout. There’s lots of good stuff there. These are things that
all of us should be doing, but we tell people that there are certain things that they need to do to be
successful on this versus sleep for what is best for your body and what is your body feel the best at
sleeping. And if you try to do that and you are trying to find that place where your body feels good and
you can’t, then people need to know that medical intervention is available. They may have narcolepsy,
they may have idiopathic hypersomnia, they may have insomnia, they may have sleep apnea. There are
80 sleep disorders out there and people have no idea that fatigue can come from something other than
a bad mattress, or work and family stress. And I was super excited to see everyone celebrating sleep
week in March, but we used it to sell mattresses and pajamas and night cream, and nobody was talking
about sleep disorders because I have a stack of ergonomic pillows that I will someday let go of, it’s hard
for me, but I was sure if I just got to that pillow, everything was going to go away. I was going to feel
good. We need it. We need a step further on this. We need a step further for people to understand what
they’re looking for in their sleep, and if they’re not getting it, how to talk about it to their doctors
because the other issue around this is that depending on what study you look at, the average doctor in
the United States has between one and three hours of sleep education.
Jen: Yeah, and probably sleeps between one and three hours themselves.
Lindsay: Yeah, or they went through their residency and they were working 48-hour shifts. People don’t
function well in 48 hours, and so we know that. And so when they’re thinking someone has a stressful
job, well, I’ve been through that, of course, it doesn’t feel good. And so when I talk about five symptoms
of being part of a narcolepsy diagnosis, they never show up at the same time, and they’re usually not
everything you think you need to tell your doctor. So they don’t know what questions to ask us and we
don’t know what to tell them. And so the conversation that we need to expand on this is how do we
activate patients so that they can get the most out of their medical professionals because right now it’s
not happening in this space.
Jen: So tell me how we educate ourselves? Like, are there resources? Because I think the hardest thing
for people, honestly in the conversations that I have because I agree with you, whether it’s six hours or
eight hours or nine hours or 5-1/2 hours. Like I don’t know that a lot of people understand what good
feels like.
Lindsay: This is all part of the work, the work that we have to do. I wish I could say, yes let me hit that
button for you and it will all be fixed, but we are trying to do more out there. You can come to my
website, I have some resources up there. You can go to my favorite nonprofit Project Sleep and there
are tons of resources there for toolkits, for everything how to identify issues with your sleep, if you
already have identified issues with your sleep how to work with your job, your doctors, etc. But we need
to do more and that people need to see sleep issues out there. One of the things that’s super important
to me is how do we fix the presumption that someone with narcolepsy falls asleep in their soup. It’s not
a funny joke, it never really was a funny joke. How do we fix this on TV? TV has moved the social needle
for us. We know that race relations and gay marriage and huge social issues being on TV has helped that
culture shift. How do we move the diagnostic needle now? How do we see somebody with sleep
disorders get a diagnosis and get treatment and I think that is absolutely possible because I will tell you
when I was at my worst with my pre-diagnosis narcolepsy, I was being awoken by a ghost child asking to
hold my hand. I lived in a bungalow in Echo Park in LA, so it was probably a yes and situation on the
hunting, but I went out and purchased sage and was trying to do a seance in my house, not talked to my
doctor about a neurological episode. Even when I got diagnosed, everyone talked about hallucinations
as being visual and I wasn’t really having visual hallucinations. All my hallucinations are generally audio.
So, getting things out there that are not a textbook definition of what these disorders are, but how they
show up in real people, if you are hearing construction happening in your backyard on a regular basis,
that’s not happening or people are in the hallway of your apartment speaking Russian at 2:00 o’clock in
the morning, these could be issues of a sleep disorder versus if someone’s just hearing hypnagogic
hallucinations. So, I want to figure out how we get more cultural representations out there so that
people are seeing this and being able to relate with it and be able to have a baseline that they can speak
to their medical professional about.
Jen: There is a lot of work to do there, I think, but what do you tell people. When you tell them I live
with narcolepsy and they have the reaction like, oh, do you fall asleep in your soup?
Lindsay: I usually laugh about it and then let them know that’s actually not how narcolepsy looks.
Although my mother has now informed me that when I was 3, I did fall asleep into a bowl of soup.
Apparently, I am a giant fraud.
Jen: I feel like every 3 year old does that. So no, you are not.
Lindsay: Exactly. It’s explaining people that this is what narcolepsy looks like for me and the number of
people in the short period of time that I have been vocal about this, who have gone to a doctor because
they read something that I wrote or they’ve had a conversation with me, or when I was talking about my
sleep paralysis episodes and they were like, oh, I have been having these since I was a little kid. But I
grew up really religious and thought the devil was in their closet, is actually a lot higher than you would
think, and I know of a ton of people because of these conversations with me in person have gone to a
sleep specialist since then. So, I can only imagine how many it is that I haven’t had the pleasure of
having the conversation with. So, it’s really important that people see and hear this stuff, but see it and
hear it as the stories that come from people and not just the diagnosis definition.
Jen: Real human people. So tell me how you manage, what does your narcolepsy look like now on a dayto-day basis and how do you manage it?
Lindsay: So narcolepsy is with me every day, whether I want it to be or not. It is a constant negotiation. I
take a medication in the morning, in the afternoon, and at night. It’s a daytime stimulant for me and
then I take something that helps my sort of sleep architecture at night to get longer, deeper sleep. In
addition to that, I meditate. I definitely find that if my stress is lower, I have fewer sleep paralysis
incidences. I try to get as much exercise as I can. I am one of those people that if I like, have a new
exercise routine and I like messed it up on Monday, I can negotiate with myself that I don’t need to do it
the rest of the days, and I will just start over the next week. So, there has been a retraining for me of
exercise doesn’t always look like getting on a treadmill and running for 40 minutes that it’s going for
walks or it’s getting in the pool at the apartment complex and doing some laps or it’s doing like a speedy
40 minute clean of my apartment where I’m moving quicker to get stuff done. And I definitely find that
as long as I have more movement in my life, long stretching session, something like that. My symptoms
are more consistent. I don’t have as many of the sleep attacks where that sleep hits me in a really hard
way. I nap every day. I try to be as consistent with that as possible. I tend to get really sleepy in the
afternoons between like 1:00 and 3:00 o’clock. So, I set up less meetings around those times and make
sure that I have a quick nap. I always sleep for under 30 minutes because I am someone who can fall
into REM sleep really quickly. I try to keep myself from getting into the REM sleep because if I wake up in
that I am going to feel really crappy for the rest of the day. I try to be as gentle on myself as possible
because there are going to be bad days, whether I planned for it or not. The more I beat myself up about
not managing it or that I am not going to get that work thing done that I planned on that day, the worst
it gets. So this is definitely a practice. I can’t say that I am always succeeding on it, but I do the best to
treat myself with kindness on this and then have a sense of humor about it. When my medication is off, I
have talked about the emotional symptoms that I have. I had one of those like pegboards that had like a
Gandhi quote on it and my partner took all the letters off one day and put days since meltdown with a
zero and now we just keep the meltdown board to turn to track how things are going. But I think if you
can’t have a sense of humor about this stuff, it makes it a lot harder, especially when people do make
that assumption about me that I am going to fall asleep in my soup or ask me how I am going to handle
something because I have narcolepsy, being able to laugh at situations does make it easier.
Jen: I think that’s wisdom for all of us. So thank you. I think we could all go about life with a little bit
more kindness for ourselves and others and a little bit more humor. So, I think that’s a message that we
that we all need to hear regardless of what our life situations are, what life is throwing at us at this
current moment. So, Lindsay, I feel like we could keep talking. This has been incredible. Thank you for
sharing your story. Thank you for everything that you do for the world and the world of sleep disorders
and those living with narcolepsy, I think that what you are doing is so incredibly important and it was a
true honor to have you on the show today.
Lindsay: Thank you so much for having me and thank you for taking the time and providing the space to
talk about this; the more people who see themselves, the better all of us are.
Jen: Absolutely.
I am so grateful Lindsay could be with us today to talk about her experiences with the sleep disorder
narcolepsy. Thank you to our producers Rivet 360 and our listeners. You can find the WorkWell. Podcast
series on Deloitte.com or you can visit various podcatchers using the keyword WorkWell, all one word to
hear more, and if you like the show, don’t forget to subscribe so you get all of our future episodes. If you
have a topic you would like to hear on the WorkWell podcast series or maybe a story you would like to
share, please reach out to me on LinkedIn. My profile is under the name Jen Fisher or on Twitter at Jen
Fish 23. We are always open to your recommendations and feedback. Of course, if you like what you
hear, please share, post, and like this podcast. Thank you and be well.
The information, opinions, and recommendations expressed by guests on this Deloitte podcast series
are for general information and should not be considered as specific advice or services.