Medicine X 2015: Ignite! Talk, ePatient Scholar, Julie Flygare

[MUSIC PLAYING] It’s being awake
inside a corpse. It’s the worst feeling
in the whole world. It’s absolutely terrifying. And it’s a symptom
of narcolepsy, but I had no idea it
had anything to do with narcolepsy at the time. Always with emotions. Laughter, or if I was
annoyed or surprised, my muscles were
giving out on me. I was driving 15 minutes
to school in the morning, after getting 9 or
10 hours of sleep. I remember getting
on the highway. I remember feeling
a little bit sleepy as I was getting
off the highway. And the next thing I remember
I woke up in the parking lot of law school. My seat was reclined. I was fine. But I didn’t remember
having gotten there. I couldn’t put the
pictures together in my head of arriving at
school, picking a parking spot. And that really scared me. And for the first
time I thought, maybe I have a sleep problem. This is not normal. I was diagnosed with
narcolepsy at age 24. But my symptoms started
probably around 18 or 19. It can be really
challenging to get people to understand narcolepsy. Everyone has
experienced sleepiness. And so to explain to people,
oh, I’m feeling sleepy, I need to take a nap, they think
that’s just sort of a fun thing to do by choice. And this sleepiness
of narcolepsy is as if I’d stayed
awake for 48 to 72 hours. That’s the violent call to sleep
I experience on a daily basis. I felt really isolated
from my friends and family that they didn’t
really get it, and I didn’t know how to explain it. I really wanted to change
people’s perceptions and open people’s hearts and
minds to the real illness. I founded Project Sleep to raise
awareness about sleep health and sleep disorders. Project Sleep runs
the Sleep Walk series. We have sleep walks
around the country, bringing people together. Then we have the Jack and
Julie Narcolepsy Scholarship, which is the first ever
scholarship program for students with narcolepsy. And this year we just gave out
10 scholarships to 10 students. I wrote a memoir of narcolepsy
called Wide Awake and Dreaming, a Memoir of Narcolepsy. I published that in 2012. I hear from people
all over the world, saying that when they read
my book for the first time they didn’t feel alone. And I kept getting
these messages from people saying that. I started to realize so
many people out there feel so isolated, but I
know they’re not, because I’m hearing
from hundreds of them. I started the Narcolepsy:
Not Alone campaign to raise awareness
about narcolepsy, because it is so invisible. I hear people say
all the time, you’re the first person I’ve
met with narcolepsy. And I’m not so sure that’s true. There are people with
narcolepsy all over the place. One in every 2000
people have narcolepsy. So it’s really not that
rare, but it’s invisible. [APPLAUSE] When I was diagnosed
with narcolepsy at age 24 I was excited to tell
my friends and family. Finally, I had a
real medical terms to describe my
mysterious experiences. But I wasn’t ready
for their reactions. One of my best
friends looked at me like I was from another planet. Other people changed the
conversation quickly. Some people laughed in my face. My experience hadn’t
been a joke at all. In fact, when I was 21, I awoke
in the middle of the night to see a burglar with
his arms stretched out towards my neck to strangle me. Next thing, I looked
up, and he wasn’t there. It was a vivid hallucination. He never had been there. But he kept coming back during
the night to terrorize me. I also had
excruciating sleepiness during the day and times
when everyday emotions, like laughter,
would cause my body to collapse to the ground
paralyzed, while conscious– a bit like feeling like
your awake inside a corpse. These very real
symptoms of narcolepsy are demoralizing, embarrassing,
terrifying, and dangerous. But the only thing
worse than all of that was feeling like no
one understood me. After getting so
many bad reactions, I just stopped telling people. I kept my narcolepsy private. So I felt increasingly
isolated and mad as hell. I would be by myself
in my car and scream at the top of my
lungs with a rage I’d never felt before
in my whole life. I went on to study rare
disease law in law school and put my passion into that. When I graduated, I kept
my narcolepsy private for two years. And I realized we were
caught in this catch-22. We didn’t like
misconceptions of narcolepsy, so we stayed
silent, perpetuating misconceptions and our silence. Someone had to break the cycle. I went on to write a
memoir about narcolepsy, become a blogger, and moved to
Washington D.C. To advocate. By me telling my
story, other people realized they
weren’t alone either. See, we don’t always have
a cure for the diseases, but we do have a cure
for the loneliness today. This is why I founded the
Narcolepsy: Not Alone campaign. With one in every 2000
people living with narcolepsy around the world, we don’t
need to feel like we’re alone. We have collected over 1,300
photos from all 50 US states and 48 countries
around the world. And speaking with
people internationally, our stories are so similar. Despite the very real
adversity of the symptoms and adjusting to treatments, it
is always the social disconnect that hurts the most. I honestly feel that feeling
isolated and alone should be a symptom of
narcolepsy so it is listed on the top of everyone’s minds
and how you treat patients facing these challenges. I’m not sure if we completely
realize this wound is there until you start to heal it. I remember the very first
time I met another person with narcolepsy. We talked for hours in her car. And I remember
thinking, she’s cool. I don’t know what I expected,
but I was really surprised to learn that she was awesome,
and she was just like me. So in talking to
medical communities though about the importance
of social support, I often feel that
eyes glaze over. And I’m not sure
they quite get it. So let me be clear. I believe that if you are
not talking to your patients about the importance
of social support, you are making a medical error. [APPLAUSE] You can help people
find these connections. You can prescribe me,
prescribe another patient with the illness,
prescribe support groups and online communities. Some patients may not
be ready for it yet. And that’s OK. But plant the seed
anyway, and let them know that truly other
people are out there living with these conditions. What does this mean? It means empowerment. It means taking off the mask and
showing the world who you are. It means that the next time
that someone laughs in my face at my serious illness,
I can close my eyes, and I can think of all the
people around the world who understand. And I can smile. [MUSIC PLAYING]

16 comments

  1. Julie, BRAVO !! I think this is one of your most powerful and heart felt videos yet! Everything explained so well, with such passion and emotion. THANK YOU !!

  2. I was just diagnosed last month . I was and still a little angry because I can no longer be a school bus driver. The only job they can offer me is a huge pay cut. So I'm just trying to get into gear on what I need to do next. I haven't experienced cataplexy , paralysis, or the vivid dreams yet. I have been searching a lot to get more knowledge about my disorder and what can eventually happen. This video is what I need to join others get help who is just like me . Thank u.

  3. Thank you more doctors, judges and disability lawyers need to hear this. This disease has ruined me and help is hard to find especially from my immediate family but I have found much support from one particular FB group and yes groups do help

  4. I just want you to know, Julie, that this was a beautiful presentation! It touched me to the core and made me realize just how much philia love that I have for you. I believe that it's obvious that you were chosen by a Higher Power for this role of advocate for all who endure daily trials and challenges that narcolepsy with cataplexy present them with. Always remember that You Are Not Alone when you are advocating for us up on stage in front of all those people. I consider you a dear friend and love you with a great amount of brotherly love. Thank you!

  5. This was an incredible video. Thanks Julie for your continued efforts to spread narcolepsy awareness.

  6. Julie, Thank you! I need/want to be involved in the physical research. I hope someday that I will be sponsored to attend seminars, events, discussion and be a spokesperson/advocate for Narcolepsy. Keep napping 😄

  7. That was so awesome. I love how it explained everything! You rock. I want to be like you Julie.

  8. really amazing. thanks for sharing. I suffer from sleep apnea, so i track my sleep with http://newswatchtv.com/2016/02/12/rem-fit/ it's interesting to me, to see that not every night is the same. I am a big napper. its interesting to learn about narcolepsy. thanks again for posting.

  9. Thank you so very much for this video– and for sharing your story. It’s been a long 13 years for me and I so appreciate being able to share this with my world.

  10. Thank you, once again, Julie [@RemRunner], for sharing your story with others! BUT, this presentation has So Much More Importance; as you were brave enough to speak to doctors about our Narcolepsy experiences!

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