S3E9 Soheila’s Story: Breaking the Narcolepsy Silence in France

In this inspiring episode of Narcolepsy Navigators, we sit down with Soheila, a 22-year-old from the north of France, to explore what it’s like growing up with narcolepsy. Diagnosed after years of symptoms and medical misunderstandings, Soheila shares her journey from confusion and isolation to self-acceptance and advocacy.

She opens up about navigating school, work, and friendships while managing sleep attacks, memory issues, and the stigma surrounding narcolepsy in France. From unsupportive managers to incredibly understanding friends, Soheila’s story is a powerful example of resilience, self-advocacy, and finding community.

We discuss cultural attitudes toward chronic illness, the importance of supportive healthcare providers, and how Soheila is now using her voice to raise awareness through her new French podcast on sleep disorders. In one of the most moving moments, she shares why she wouldn’t press the “red button” to cure her narcolepsy—and how it has shaped her into the strong, determined person she is today.

Episode Highlights: 

00:00 – Introduction
 05:00 – Navigating Work with Narcolepsy
 09:15 – The Long Road to Diagnosis
 14:00 – Finding Acceptance Through Support
 17:00 – Family Reactions and Challenges
 23:00 – Friends, Loss, and True Support
 27:20 – Misconceptions About Narcolepsy in France
 31:10 – What Needs to Change in Society
 35:20 – Managing Symptoms and Daily Life
 39:30 – Social Life, Dating, and Boundaries
 44:14 – Advocacy and Launching Her Podcast
 48:58 – Why She Wouldn’t Cure Her Narcolepsy

Chapters

• 5:00 Navigating Work with Narcolepsy
• 9:15 The Long Road to Diagnosis
• 14:00 Finding Acceptance Through Support
• 17:00 Family Reactions and Challenges
• 23:00 Friends, Loss, and True Support
• 27:20 Misconceptions About Narcolepsy in France
• 31:10 What Needs to Change in Society
• 35:20 Managing Symptoms and Daily Life
• 39:30 Social Life, Dating, and Boundaries
• 44:14 Advocacy and Launching Her Podcast
• 48:58 Why She Wouldn’t Cure Her Narcolepsy

Transcript

00:13 - Kerly (Host)
Hello, welcome. You're listening to Season 3 of Narcolepsy Navigators, brought to you by
Naps for Life CIC. Narcolepsy Navigators is a podcast for raising awareness of these
fascinating illnesses through a deep dive into the lives and individuals living with narcolepsy,
idiopathic hypersomnia and Klein-Levin syndrome. I'm Keri Boger, the founder of Naps for
Life CIC, and welcome to our stories. Hi everyone, and welcome to Narcolepsy Navigators.
I'm Kelly, your host. I have Narcolepsy Type 1.
00:49 - Liz (Co-host)
And I'm Liz, your co-host, and I also have Narcolepsy with cataplexy.
00:54 - Kerly (Host)
And today we have so from north of France, and the subject for today is growing up with
Narcolepsy.
01:04 - Soheila (Guest)
The subject for today is growing up with narcolepsy. Hi everyone. So I'm, so I have also
narcolepsy type one, from France, the North of France, and I'm 22 years old. Welcome,
thank you. So how was your week, when it has been exhausted week? Um, I had a lot of
sleep attack at work, which was really hard, but a typical week actually. This was nice.
01:28 - Kerly (Host)
And yours. Yeah, the week went really quickly. But today I went for, joined a walking group
and walked around the park. So I haven't done that in a very, very long time. So that was
nice. And I took Bella, my, my new kitten, out on a leash and as we parked and then it's so
funny all the dog owners were like staring at me strangely. And then two people came up to
me and said how. One lady said her daughter walks her cat and another person said their
neighbor walks their cat. Everybody else was just looking at me like oh, it's nuts. Bella didn't
seem bothered by the dog. She wasn't bothered. I think she was overwhelmed because
there's so many new faces and then the birds and the squirrels. It was a lot of stimuli, but I
think if I do it once a week she'll get used to it. Yeah, good plan, annelies. How was your,
your week?
02:27 - Liz (Co-host)
my week has been good. I've also had a really tiring week, I think, even though it's my usual
routine. I think it's because I'm the week before my period, so I've just been so exhausted
and I was very grateful when the weekend came around because my laundry basket was
overflowing so much like I had clothes everywhere. I was very grateful when the weekend
came around because my laundry basket was overflowing so much Like I had clothes
everywhere. I was like God, I just need to have some time to actually do house chores,
which I finally managed to do, and I've had a very relaxing weekend, so I feel a bit more
refreshed now a bit more refreshed now.
03:11 - Kerly (Host)
Someone put this up online last week and it's so powerful I must share it, and I just thought it
just explains like everything.
03:16 - Liz (Co-host)

Oh, is it the thing I shared on my Instagram about how long it takes to recover from? Yes?
Yeah, so that was someone who we interviewed on the podcast who has IH, and I'm not
sure whether they created it or they shared it and then I shared it from them, but it said
things like recovery time from doing laundry like two days. Recovery time from going to the
gym and exercising like three days. You know, like, how long it actually takes us, as people
with sleep disorders, to recover from doing different activities.
03:49 - Kerly (Host)
Yeah, so like, for instance, it says waking up two hours recovery. Taking a shower three to
four hours recovery. Getting ready for the day one to two hours recovery. Doing laundry one
day recovery. Cooking a meal four hours recovery. Running errands two days recovery.
Running errands two days recovery. Doctor's appointment two to three days recovery.
Exercise four hours recovery. Tidying the house six hours recovery. Going out with friends
two to four days to recover. I learned Wow.
04:19
And that laundry one just made so much sense to me. I said, that is why it takes so long to
do laundry. One day recovery.
04:27 - Liz (Co-host)
Yeah, and I guess it varies for different people and at different times, like whatever you have
going on, but it's actually so helpful to think about that because you kind of forget that
household chores like how much effort they actually take and afterwards how much time you
need to get over the fact that you've just exerted all that energy definitely is it like just a
British app, or can we like have it in France also, do you think? So it was a post that
someone shared on Instagram so I can send it to you.
05:01 - Kerly (Host)
It's just like kind of like a poster type thing.
05:04 - Liz (Co-host)
Okay, so you said you had sleep attacks in your job this week and I was just wondering what
your job is and how they react to you having sleep attacks at work.
05:17 - Soheila (Guest)
Well, so I'm working in a school, in a kind of business, promoting the courses that kids have
to follow in the school. So I like communication, marketing and business three at the same
time, and so it's the first time that I have a job like respecting the narcolepsy. So I ask for
only one office to be in my own office to do this, the nap, and that to be more focused when
I'm working, because otherwise it will be an open space, which is annoying because there is
noises everywhere, which is no way, like no way so tiring to have to try, yeah, the focus.
05:57
I'm like really slow at work when, in that case, like, there is too much noises. Um, so they do
respect that when I'm trying to be organizing my nap, I'm doing every lunch time between,
like I'm taking a nap of 20 minutes, and in that case I'm like I'm just in my office, everyone
knows that I'm sleeping and they like do not disturb me, that's good it's really good.

06:23
but when attacks happens, it's especially when there's like a lot of rush in work. So they all
look at me. They're all looking at me in a way like what are you doing? Because they never
saw me sleeping. Yeah. So when they're seeing me they're like what are you doing? And
then they're like remembering that I have an epilepsy, so they do respect that after all.
06:53 - Liz (Co-host)
And do you think the sleep attacks were brought on by feeling stress or pressure over the
past week?
07:00 - Soheila (Guest)
Maybe pressure actually, because we had a lot of work. We had a lot of things to do to
handle that work, so maybe pressure actually. Yeah, I never thought of that, but yeah, maybe
pressure.
07:14 - Liz (Co-host)
And are they quite forgiving of that? Have you had a conversation with them about the sleep
attacks?
07:20 - Soheila (Guest)
Well, I don't know, like I said, they do respect that, but they're going to have that look in my
face Like they're going to look at me and they're like, yeah, she's sleeping, but we need her.
What is she doing? But they know, you know, that their look is changing when they see me
like that, like for a few days after they went maybe to see me in the way that they're just here
to sleep, right, that's kind of weird. Actually. I never spoke of that with my manager, but we
can see in his face like he's just not good with that, I think so. Do you think he was?
08:05
judging you yeah, only now, because we have a lot of work.
08:10 - Kerly (Host)
He knows that you have narcolepsy though. Yeah, he does.
08:13 - Soheila (Guest)
Yeah, I have a lot of accommodation at work. Did you respect that? Because I'm officially
someone who needs accommodation at work. He respects that, but I think he's not
understanding what it means. Mm-hmm.
08:28 - Liz (Co-host)
Yeah.
08:30 - Kerly (Host)
I think that will take a little time for him to slowly, slowly, start to understand.
08:36 - Soheila (Guest)
Yeah, yeah, and I think he's also like that generation. Yeah, it's in your mind, never mind, oh,
okay.

08:44 - Liz (Co-host)
So that's kind of typical, I think, to get that has he said something that has given you that
impression?
08:53 - Soheila (Guest)
No, but in the look in his face it's changing every single time. I have like a split attack. So you
feel it.
09:02 - Liz (Co-host)
It's weird. Yeah, it's like a microaggression.
09:06 - Kerly (Host)
Yeah definitely Okay. So let's take you back a bit. Can you tell us when you first started
experiencing symptoms of narcolepsy? How old were you Now?
09:16 - Soheila (Guest)
I'm 22, but the first symptoms was when I was nine.
09:21 - Kerly (Host)
And when were?
09:22 - Soheila (Guest)
you diagnosed and diagnosed. I'd like to say there is like two moments when I was
diagnosed, so the process was really long, so officially I was 19, but unofficially I was 15 or
16 okay and the doctor knew that I was sick.
09:44
He was kind of old, at the end of his work career, so he was like I was not like his favorite
case, I think, of his work career. He wasn't into it. So he just thought that I was just. I was
sleeping a lot because I was in my teenage era, so he really didn't care about that. He gave
me pills. Medication wasn't working because I was always asleep. I was anxiety because of
what he was giving to me and then it was like there is only way you might have narcolepsy.
Oh no, what is narcolepsy? Like new, I was 15. And he explained it to me and then he said
there was only one way to know if you had that. It's like the lung production. So I did it. When
the result came, it was official. I was not in the French majority, which is 18. So you wasn't
able to like transfer me to another services like and the hospital, because where I live we
have an entire area specialized just about sleep and they wasn't able, since I was young, to
transfer to that.
11:04 - Liz (Co-host)
Oh, so you have to be 18 to access those services? Exactly, I had to wait.
11:09 - Kerly (Host)
Oh, wow, wow.
11:11 - Soheila (Guest)
So officially, I'm diagnosed since I'm 19. I've been dealing with all the symptoms and
everything for like 10 years, maybe 11, I think. Wow, wow okay 11?

11:34 - Liz (Co-host)
I think Wow, wow. Okay, how did you feel when you were diagnosed?
11:35 - Soheila (Guest)
either the first or second time or both. Well, the first time I was confused. I was confused
because I was young and I was thinking only one thing, like I want to know what I have,
because I'm seeing all people of my age going out have a drink together, which I wasn't able
to do because I was all the time tired, and I was like just confused. But when he told me that
you have no epilepsy, like test results are here, you have no epilepsy I was like, yeah, so
what is going to happen? I was kind of relieved actually it was a relief.
12:12
And third time, so when I finally been officially diagnosed, I cried oh wow. Yeah, I cried
because it was a new neurologist and she's just amazing. She's still my neurologist today
and she just was how do you stay for that time, like being without any medication? And she
was so empathic with me you have an epilepsy, that's official, but we have to do all the tests.
But I will here for like to help you. We need to test, to do all the tests, but you're going to take
also all the medication for it to help you like to have a better life. And yeah, I cried. I
remember that I cried. She helped me to accept the epilepsy, which is amazing that's really.
13:04 - Kerly (Host)
We always say that it's so important that transition of acceptance, and it's nice that you were
able to have a doctor that was able to help you through that, because a lot of people they get
diagnosed but then they're just left there and then they don't know how to deal with the
information because no one's sort of guiding them through. So you were very fortunate to
have this doctor that guided you through.
13:26 - Soheila (Guest)
Yeah, I heard a lot of people having that. When I'm hearing this, I'm really lucky, because
that must be awful for them. They know what they have but they cannot do anything about
that. That makes me sad. When I'm hearing stories of people like that, it's just awful.
13:47 - Liz (Co-host)
What did she do that helped you to accept the narcolepsy Well?
13:53 - Soheila (Guest)
there were like one appointment when I was asking all the questions. I needed to have
answer of it and the first symptom I had was getting weight when I was like eight and I never
knew that it was a real symptoms of narcolepsy when you are young and I was telling her
about that and she was like, well, you had all the first symptoms when you were young and I
was asking her a lot of questions and she took the time to explain everything to me how it
works in the brain, everything, and it helped me to understand a lot of things. So she just
took some time to explain everything to me. That's how she helped me. She also told me to
like maybe going to group support, to go to association. That might help me talking to
people, not being afraid to talk of what you have, and that's really helped me and it's still
helping me today. Like to talk about that.

14:58 - Liz (Co-host)
We have not feeling embarrassed about that yeah, that's amazing and I think that is so
important, those two things. So having the time to ask all the questions you want to ask and
being told early on, like having a community of people with narcolepsy will help so much,
because that's how you kind of normalize all your experiences right by hearing what other
people are going through and being like yeah, that's how you kind of normalize all your
experiences right by hearing what other people are going through and being like, yeah, that's
the same to me. I'm not alone in this yeah, definitely.
15:32 - Soheila (Guest)
And there was like one group that helped me, by the way, that there is a French association
called INC, only for like people with a person with anaphy epilepsy and unfortunately, those
people who are in the association are all sick, so they do not have time to like help other
people. That's, it's just weird. So I found a new group called wake up now club See, maybe
you know it and it was two years ago and it's been just two years that I accepted that it was
sick two years, which is short anyway, and this is the first time that I had a group support and
also I cried so, yeah, having people like you, it's just you have that support. That's just
amazing, because your first thought you have in your mind is like, wow, I'm not crazy. Yeah,
and just when you were talking about the struggling doing casks, I was like, yeah, I'm not
that crazy.
16:36 - Liz (Co-host)
Also, every single time I'm hearing people's stories and how they live the illness, I'm like,
wow, I'm still not crazy, yeah, and it's so important to hear those things all the time because,
yeah, we might hear it once and it makes us feel good in that moment, and then a couple of
weeks later we have another really difficult day, and so having that repeated exposure to
other people with narcolepsy can be really helpful yeah definitely so.
17:05 - Kerly (Host)
How did your family react?
17:09 - Soheila (Guest)
this one was hard. Uh, this was it's still hard for some of them. I'm not sick, like yeah. So it's
actually my dad who was worried about me. So I was like everything started with a trip in my
family in Nigeria and from that, when I came back to France, I was always sleeping and my
dad was like this is not normal. And I was getting weight, which is not normal at the time
because I was not eating a lot.
17:42
And so, for those people that I know me, I'm never late, never late. I'm like always on time
when I have appointments at school, never late. And so I was not taking lunch. I was taking
lunch at home at school and so I was not taking the lunch. I was taking lunch at home at
school. So during that time of lunch, I was like spending maybe 10 minutes just to eat and
the rest just to sleep. And there was that day when I was late and my dad was like wake up,
wake up. You're late to school, which is unusual for me. And he was like there is something
wrong. You're always prepping, you do not remember what you are doing, like there is
something wrong. So he started to like to to talk me to the neurologist, but still today for him,
like just last year, that he really understood that I was sick For my mom. I think she's not

accepting it. I really think that Sometimes she's not here because she's like I cannot
understand when you're leaving.
18:51
I'm trying to be here, that's weird also for her, I think, to accept that. But I have siblings who
are really supporting to me. They're like been there for all my appointments and sometimes
I'm trying to explain to them what I have and they were like oh, there's not just sleep, there is
a lot of things coming with that and they want to know about that. But just like the most
difficult part is with night pirates, I think today why do you think your mom isn't ready to
accept?
19:27
it. I think, as a mom, it's difficult to accept that your child is sick. I think there's like, what did I
miss? What I've done wrong? So I think that there is that part of, yeah, there is a part of her
like as a mom who's like questioning herself, like how everything that happened, so my child
have to take for the rest of her life pills, medication, and she's sick? My mom has a few
illness, clinical illness, so she knows what being sick means. So, yeah, I think there is a part
of her life who is maybe not accepting, because she don't want to accept that she missed
something in my life and I'm the youngest one, so I'm like the baby, so it's making harder for
her to accept that.
20:21 - Liz (Co-host)
Be feeling guilt around it or, yeah, not wanting to accept how difficult it could be to have a
long-term condition. So maybe she feels guilt around it and not wanting to accept how hard it
will be for you potentially.
20:36 - Soheila (Guest)
Yeah, I, I think there's also that part, but I think she just does not know what to do.
20:42 - Kerly (Host)
Maybe she's afraid, like to doing something wrong in that time. Well, it's still early days, like
you've had the symptoms for 10 years, but you're just officially, officially diagnosed, not so
long. So I think there's time for her to come around and time for her to learn more, and if she
wants to, there's time.
21:05 - Soheila (Guest)
Yeah, but there's that deny part.
21:08 - Kerly (Host)
Yeah.
21:09 - Soheila (Guest)
Like she really don't want to accept that.
21:11 - Kerly (Host)
Yeah.
21:12 - Soheila (Guest)

Because she's not going to Google what is narcolepsy. She's just, she knows from me what
is narcolepsy. She knows from me what is narcolepsy. She hasn't read it for herself. Yeah.
21:22 - Kerly (Host)
I always tell people that it's hard for the family members. We go through the stage of grief, all
the stages of grief, but they also go through the stages of grief and some of them spend
longer in certain stages than others. You just wish that they would just go through it faster. It
can be quite frustrating in yourself because you're just like, ok, move on to the next stage.
But some people spend a long time in certain stages, and this might be what's happening to
your mom, so she's staying in the denial stage, she won't move on to the next stage of grief
and she has to go through all the stages before she gets the acceptance next stage of grief
and she has to go through all the stages before she gets the acceptance.
22:02 - Soheila (Guest)
Yeah, because you know she's really supporting me in the projects of my podcast. In French
she's like go for it, you're going to help so much people. That's why that's also funny. What
about your friends.
22:26
Oh god, thank god, they're here thank god they're here because, uh, they're like I can take
nap every time want with them without any feeling of being thinking things uncomfortable.
Um, for some of them, they knew me forever, so they saw me growing up with narcolepsy.
Sometimes they're like, oh, you can be so proud of what you're doing even if you're sick, and
they're just like, thank God they are here. That's just. I want to say that Thank God they are
here, the newest because I have like a few friends, like maybe from two years from now.
Two years ago from now, first time, I'm like saying to them I had this oh, wow, what is that?
Tell me more about that. Like, how can we help you about that? Should we have to do
something? And when there's that moment that I have to take a nap, yeah, sure, sure, take
the time you need to rest.
23:28
Yeah, thank God they are here. That's what I want to say. That's so nice. So a friend that I
have now, who watched me growing up, but also when I was young and I had like friends,
who was mocking me sometimes, that was the hardest part when I grew up with them,
because sometimes they are asking me, oh, should we get a drink? Oh, can we go get a
drink now? And I'm saying no. Then, like sometimes some of them who are not friends with
me anymore, who like took it personally, they think, just because I don't want to go out with
them, that I say no, which is not true actually. And yeah, there is that good part that I have
friends who were here but there there is also friends who wasn't able to get that, which is
what I lost a lot of friends for that.
24:27 - Kerly (Host)
But it's good Sometimes. God, Mom, take people out of your life to replace them with better
people that you know is going to be better for you.
24:36 - Soheila (Guest)
Definitely yeah what's happened. Yeah, it's definitely. Yeah, it's what what's happened.

24:39 - Kerly (Host)
Yeah, what yeah it's definitely hard when you're going through it, because, especially if
you've known them for a long time, you expect more from them. And then it's disappointing
when they think it's don't want to hang with them or you're being against them, when that's
where you're trying your hardest.
24:55 - Soheila (Guest)
So yeah, but then luckily God replaces them with people that understand and are caring and
supportive, so that's good because of that, because of those moments, those sad moments
when I was growing up with that, I was asking myself why me, why I had that, why it's
happening to me like I'm not strong enough to handle that, why me? How am I supposed to
live without, how am I supposed to have a social life with that? And I was young, I was in
high school I was like how am I supposed to live just in simple life? Because I was trying to
live in simple life without it, without the neuroepilepsy I wasn't strong enough to do. And,
yeah, it was like this moment when I lost friends. I'm so sorry, but why me?
25:48 - Liz (Co-host)
And what got you through those really tough moments.
25:52 - Soheila (Guest)
My family and the friend I had at that moment and the friend that I had during those tough
moments, were like if they do not get that, get rid of them, because you have to understand
that you are sick and you are born with it like it's your destiny. You just have to live with it and
to show that you are strong enough. And there is that one friend who was like you will never
get rid of that. It will be with you every single time, every single day of your life. So learn to
live with it.
26:35
And since she told me that sentence, I was like I have no choice. I cannot lose time to be
sad of that. I just have to live with it and to show how, how it is my straight day, because for a
long, long time it was my weakness, but now I'm strong with that. It makes me stronger every
single day because I lost people, but I get stronger every single day. But I think it's the
mindset that she was saying in your mind you're okay, it's here. You cannot deny it, it's here.
You just have to accept it and go and live your life with it 100%.
27:21 - Kerly (Host)
So how aware do you think people in France are about narcolepsy? God, they know nothing.
27:27 - Soheila (Guest)
Oh no, no, they know nothing. There's just only one thing that they know. Like that I hate. It's
a movie called Narco and it's a story about a man who just got engaged and he's just always
sleeping and he's struggling to find work and he's thinking of to cheat on him because he
doesn't have a work and he's always sleeping. But thanks to the hallucination he got, he's
going to create a book, to draw things, so everything is going to make him like bigger and
strong, like famous and everything. And they're just everything they know here that movie,
which is awful because you're going to see the man he's eating and then he's going to sleep,
which is not true. It's not going to happen like that. And they all, just they know that that's it.

And some documentary of people with narcolepsy. They're just funny for them, like they
cannot take it seriously.
28:38 - Kerly (Host)
So it's the same in France, as it is in the US, as it is in the UK, really, yeah, I was hoping you
were going to say something different, but isn't it, liz? That's just how TV has depicted it.
Also, with you know, mr Bean, whatever, and in the US.
29:00 - Soheila (Guest)
It's funny when I say to people just to the 200 people that I'm seeing, because I might be
able to sleep in any situation it's like the movie. You're sleeping like the movie, like you want
to talk to me and then sleep like that, like no, not that.
29:17 - Liz (Co-host)
It's more than that. That must be so frustrating, and so is that film. You said the name in
French. Does that mean narcolepsy?
29:27 - Soheila (Guest)
yeah, it's the short name for narcolepsy in French narco narco uh, okay, wow, and so they
just completely so bad.
29:41 - Liz (Co-host)
so the film you're talking about just completely misportrays narcolepsy. Definitely, definitely.
29:47 - Soheila (Guest)
There was, maybe last year. There was not a TV show, but it's kind of a TV show. It's a show
of people telling their stories, but different kind of subjects. And there was that woman was
talking about what it's like to have that and when I was seeing the comments people were
like finally, someone talking about that, finally, finally, finally, like people want to talk about
that. Just, I think they don't want to. I was asking to my neurologist if they knew people who
were ready to like talk in my podcast and she was like you know, here we don't have to talk
that easy of illness and there is like culture, things of people not talking about their
weakness, I think so it's a part of french culture to not.
30:46 - Kerly (Host)
You know, it's inappropriate to talk about these things.
30:49 - Soheila (Guest)
I don't know but it's like a shame for them, mm-hmm.
30:59 - Liz (Co-host)
What do you think needs to change in order for society to be more accepting of conditions,
illnesses, disabilities?
31:10 - Soheila (Guest)
Open-minded people. I think this is what we need actually Now. We need open-minded
people because now people don't know a thing about what sleep hygiene means. Like they
don't know a thing about sleep hygiene means like they don't know anything, and I think that,

yeah, even if you talk about that, it's one thing. To talk about that, it's another thing to have
people understand and get that. So, yeah, I think they have to be more open-minded and not
to talk about every time about the same thing. Like they get to go further and like do some
research, be more interested about some things.
31:55 - Liz (Co-host)
Yeah, and why do you think there is a stigma against health conditions in France?
32:05 - Soheila (Guest)
Oh God, that's actually a good question. I don't know, honestly, like you know, maybe like
people are going to be like they are sick every single time. I don't know.
32:18 - Kerly (Host)
Honestly.
32:18 - Liz (Co-host)
I don't know. And with your workplace, have you had experiences where they weren't
supportive of you having narcolepsy, or did it surprise you in your new job that they were so
accommodating?
32:33 - Soheila (Guest)
Yeah, yeah, definitely. So I'm now working in a school and three years ago I was working in
another school and my manager at the time was really open-minded about that but wasn't in
like to giving me more accommodation. I was in an open space. I was just doing my naps
like this, like in my desk, with people coming and going, coming and and going, which was
awful, but at the time she didn't care about that because I didn't have an official recognition.
She didn't care about that. She was like, yeah, that's not my business, just organize your
things and that's it. And yeah, so it was really surprising to going in that new job, having
people really listening to everything that I had, that I needed. And then, yeah, it feels weird at
the same time. I'm like is this real?
33:40 - Liz (Co-host)
Yeah, I know the feeling and in my job they're probably the most supportive job I've ever had
and it's the same feeling of can I trust this? Are they really that supportive, or you know it's
so it it takes a lot to, yeah, really trust in your job and be like, okay, they do have my back in
there.
34:02 - Soheila (Guest)
Yeah, having supporting people is just amazing and we don't at the same times. And you
know, talking just going by about the judging phase that my manager has with me today for
people now, at least here in France, having narcolepsy is just saving and that's it, like the
focused part, the overthinking at the same time and like forgetting everything at the same
time, does not exist. For that they're going to say, oh, maybe you should try like a method to
help you being more organized, or maybe like you should try that and try this. And honestly, I
don everything and nothing works. But I think today it's like that, having that judging face
towards me because they think I'm not organized as a people. Yeah, and they do not know
that because of narcolepsy.

35:01 - Liz (Co-host)
They don't understand the full picture and all the different symptoms that are involved. Yeah,
definitely that's tricky. How did you learn to manage your symptoms of narcolepsy? You've
mentioned medication and if you feel comfortable, you can talk about that with us as well.
35:20 - Soheila (Guest)
Yeah, definitely so. I've been on Wackyx, which is for a year Amazing, after a year awful it
wasn't working anymore. I had anxiety attack, but then I took I'm going to pronounce it in the
French way Ritalin, and it sounds better in your accent.
35:48
It's been two years and it's amazing. I know how to organize my nap, I know how to manage
everything and, again, my neurologist helped me a lot. She's giving me advices and she
helped me like to organize my day when I am at work and when I'm at home, which is really
nice to explain you. A typical day in my work day and I wake up at 5.30 and I start my day.
Wow, that's early. Yeah, because I start my day. Wow, that's early, yeah, because I start my
day really early.
36:28
In the case I go back to sleep. I know I will be late to work, so I'm getting ready and when I
see on my phone that I have maybe 10 minutes where I can take a nap, I take it and then I
go to work. I go to work, I'm working and everything, and I'm like waiting my lunch time to
take my 20 minutes nap, and lately I've been like maybe taking 40 minutes of nap, which is
huge anyway and then I'm working and when I leaving work, I'm going home and I sleep. I
sleep, I wake up, do my dinner, go back to sleep, and then I have to wake up every single
night. It's like my daily nap and this is how I work and when I feel that I'm tired, I'm not going
to be. Oh, you have no, stay up, stay up. I take the time. Even if it's five minutes, I will take
those five minutes to have a nap. That's a good system. This is how it works.
37:34
Now it was the daily symptom. I have an alkalipsis, like more in the focus way. I forget
everything I'm saying, everything I'm doing. Just like an hour ago I was saying something to
my sister and she was like God, you're scaring me. I was talking to you about that, like a
week ago. I was like I do not remember and yeah, and sometimes it is scary, even for me.
38:00 - Kerly (Host)
Yeah, the memory loss is scary.
38:02 - Soheila (Guest)
Yeah.
38:03 - Kerly (Host)
Yeah, it's absolutely scary.
38:04 - Soheila (Guest)
I don't know for you, but it's getting worse. I'm getting aged.
38:08 - Kerly (Host)

It's getting worse? Yes, it does. It gets worse with age 100%.
38:12 - Soheila (Guest)
Awful. You feel that you're getting older and then you also feel that you're getting worse with
that, which is awful, 100% the thing that gives me hope is thinking that one day there might
be a cure.
38:26 - Liz (Co-host)
So that's always what I go back to in my head when I start to worry about this.
38:32 - Soheila (Guest)
Yeah, I think it will be for a long time maybe, but yeah, there is like a hope. You want to go. I
went to the european collapse today in montpellier it was in France this year and they were
showing all the evolution, all the suits that were here, and there is also that you know the
French doctor who lives in the US, the French coroner, dr Meniao, yeah he was there and he
was explaining everything and really it gave me hope.
39:07
I was seeing doctors and specialists from all around Europe. They're moving forward, they're
doing some things and, yeah, to go back to what you were saying, liz, it's really giving hope.
39:19 - Liz (Co-host)
Yeah and so how does narcolepsy affect your social life?
39:36 - Soheila (Guest)
outside of work and things like dating or whether you have a partner. I don't have a partner,
and it's choice. Because I'm afraid of that, because I'm afraid of how he will accept that. And
there is this paranoid side of me, like saying you don't trust people, you don't know how
they're going to use you because of their epilepsy, because of this moment of weakness you
have during your day. And you know, sometimes I'm not answering my friends for days on
snapchat and instagram, anything. So they know how it works.
40:10
And I'm like, if I have to have a partner and he will see that I'm not responding to him like for
days because I just forgot he's going to end up things with me. I'm just no way. And, yeah,
I'm not ready to have that yet, because I have to accept that and to trust people. Yeah, all
the while, my social life is kind of great. I'm seeing friends, we're going on a trip sometimes
and I'm the one who's always sleeping. Like there is like a seat in the car for me where I can
like take a nap, they have a pillow for me and like, yeah, just, I'm okay with that. The dating
part is just hard.
40:57 - Liz (Co-host)
Hmm, yeah definitely, and the right person will accept the narcolepsy and see strength in it.
Just to reassure you when you're ready, thank you. How do you navigate social situations
with your friends and letting them know your needs in the moment?
41:20 - Soheila (Guest)

well, I can give you examples. I have two best friends and those two where I'm going some
trips. I'm doing some trips with them and so in the car they know like I have the seat. But you
know, when we are doing activities and I'm just like girls, I just need 20 minutes, I promise
I'm just going to take enough, and then I will be like let's go, let's do this, let's do that, and
they're like okay, yeah, go on, do what you have to do. So they're like really, really
supportive.
41:55
There's also that part. When I'm doing some parties at night. I'm always asking like, is it
possible to have a place where I just have to to take a sleep, a short sleep, right place. And
they're like yeah, okay, yeah, you go.
42:10
Last year I had a wedding of my friends and it was a small place and it was 10 pm and I was
sleeping. I was feeling asleep. I was trying to say wait, but I wasn't able to, and I was with
people place. I was trying to say wait, but I wasn't able to, and I was with people who didn't
know me. I was just okay. If you see me being like that, it's okay, that helps. I have like
narcolepsy and I was like that during the wedding and one of them was like just take the key
off my car, go find a way, just put everything in the dark and go have your nap. That was nice
and just yeah. I'm like trying to always finding the place, always trying to find a situation
where I can sleep during moments, always trying to find a way and never like I'm learning to
live with that.
43:05 - Liz (Co-host)
It sounds like you're quite open about having narcolepsy as well.
43:09 - Kerly (Host)
It is normal.
43:10 - Liz (Co-host)
That's that point you know where you're, you're happy to tell strangers and you feel confident
with that.
43:17 - Soheila (Guest)
I'm someone really honest, so I'm talking like that and sometimes it came like that. At the
beginning I was crying when I was telling people what I had because I was feeling like forced
to tell everything, but now I'm just okay. I have this, I have that. I might be able to be asleep.
Just go for it and just growing up with this is just normal for me. So why it cannot be normal
for people to see people like people sleeping? It is normal because it's illness. You have to
live with it, you have to go for it. So, yeah, I think I make it normal in my mind. So I think I
have to make it normal for people.
44:04 - Kerly (Host)
Yeah. Have you been involved in any advocacy work or raising awareness in France or in
another country?
44:14 - Soheila (Guest)

I'm trying to. So I recently joined the French Association, which is really, for people, really
supportive. I'm going to meet them at the beginning of October in Paris. So, yeah, they're
trying to do everything they can. So I created a podcast to help them having more
awareness about that. But just this year, I'm trying to do everything I can to help people
know. But I was just a part of the week of pro-eclipsy group for people like from young age to
college. It's a group chat that we have of people from all around the world, like talking about
the case, how they feel, about how they feel happy, any advices and yeah, that's it. This is all
what I'm doing, but from now I'm doing everything that I can. That's good. Yeah, so I'm a fan
of podcasts. Two years ago I knew that I wanted to do something around that, like I want to
do something, and I was like I said I'm a fan of podcast. And a year ago in my studies we
had that fake project we had to do on a podcast and it came like that I'm going to do a
podcast about that.
45:39
I love speaking, sometimes a little bit too much, but I love speaking, sometimes a little bit too
much, but I love speaking and people have to know, and I want people to share their stories,
to know how different we all are and how we are going to live through that and we all have in
common, like the sleep, and I wanted to make people those you know, those annoying
voices, those annoying people. I wanted to make them a step forward to the light. I wanted
to make them like their moment to just tell their story, because I was talking to a lot of people
and their story is just amazing and they're like going through a lot of things at the same time
and I want them to be putting on the light. And so I created Le Riffreur, which is called in
French. I don't know how to translate it in English, but it's all like that in French.
46:34
I'm releasing the first episode in two weeks and I'm going to like the ideas to receive people
with sleep issues, sleep disorders, to understand what they have and how sleep hygiene
impacts your life, and it's going to be translated in English, by the way. Oh, wow, yeah, so
what's the name of it? I will send it to you in the chat. Yeah, in the chat.
47:00 - Liz (Co-host)
Yeah, so we could. I definitely can't spell that. No, so we can tag it. Oh, that's could. I
definitely can't spell that no.
47:04 - Kerly (Host)
So we could tag it. Oh, that's great, it's going to be translated to English. That's nice.
47:09 - Soheila (Guest)
Yeah, I have a friend who is like doing translation studies. She's going to help me with that.
So, oh, that's nice, yeah, but the main thing is to show how France is doing things, because
now France is in this position where, where she's like doing nothing, which is false. There's a
lot of people in France who does have that and I would like to really show to Europe maybe
the world, I don't know how France is trying to change things, because they're doing
everything on their own. All the labs of the doctors, they're doing everything on their own and
I want to really to show to people everything they're doing. That's why I'm going to receive
my neurologist to explain sweat and sleep. Yeah, she's used to going on the radio and
everything, so she's going to come and I think it will help people and I wish it will help
people?

48:04 - Kerly (Host)
No, it definitely will, that's so exciting.
48:08 - Liz (Co-host)
Good luck with that. Yeah, very exciting. Thank you, yeah.
48:11 - Kerly (Host)
It takes us to those when it goes live, and so we can promote it as well.
48:15 - Soheila (Guest)
Yeah, firstly, thank you, and you will. I will send it to you, which will see that it's a friend of
mine who did the logo. It's a brain, a lot of moon and stars. It's really nice.
48:27 - Liz (Co-host)
Yeah, that's nice that sounds really cool. Thank you. It's now a good time for my favorite
question, caroley. Yeah, so I'd like to ask all the guests at the end of the episode if you could
press a red button and completely get rid of narcolepsy from your life and never had
experienced it. Would you do it and why I wouldn't?
48:58 - Soheila (Guest)
I wouldn't at this. Maybe, like a few years ago, I would say yes, but now it brought me here, it
brought me where I am, it makes me stronger and everything which is happening to me
would never happen without that. I met incredible people and it's weird to say that, but I
cannot imagine my life without that, because it really makes me stronger in that mind where
everything happens for a reason and I was born to have that for a reason. Now I have to
fight that reason. So, yeah, no, the answer is no, I would never. I would never like press the
red button.
49:40 - Liz (Co-host)
Oh well, thank you for sharing. It's been really nice to hear your story and all about your
experiences of growing up in France with narcolepsy.
49:48 - Soheila (Guest)
Thanks, to you for receiving me. It was a lovely time. Really. Thank you for everything you're
doing. You're helping a lot of people. You have to know that.
49:58 - Kerly (Host)
Thank you so much.
50:00 - Liz (Co-host)
And what we like to say at the end is happy napping everyone.
50:04 - Kerly (Host)
How do you say it in French? Like happy, happy napping.
50:13 - Soheila (Guest)
I bet I butchered that.

50:15 - Kerly (Host)
Views and opinions in these stories may not work for everyone. If anything you have heard is
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