Interview With a Fellow Narcoleptic

Living with narcolepsy can be a challenge and is not always easy. One of the things that I struggled with in the early days of my narcolepsy was a feeling of isolation. I felt no one really understood what I was going through or how it felt to just struggle through each day like someone who had not slept in days. I remember the difficulties of having to explain to people that I was not lazy or mismanaging my time.

Meeting my first friends with narcolepsy

I also remember how amazing it felt when I met my first narcoleptic friend, when I had someone I could call and vent to about my day, the things that had annoyed me, or simply just things no one else would understand.

For years, I had 1 close friend with narcolepsy. That circle started to grow within the last decade when I started attending the narcolepsy retreat and volunteering with Narcolepsy UK. I made great friends there and even more in the last couple of years with the start of Naps4Life, where narcoleptic individuals from across the globe get to come together and connect, support, and encourage one another.

Hearing each other's stories and seeing the similarities and the differences has provided the opportunity for more to be learned about narcolepsy from those who have been living with it for years. The chance to hear from more individuals may make it easier to reach more people early on their journey whose life experiences do not match mine but may match someone else's.

An interview with a friend living with narcolepsy

Today I will be interviewing a fellow person with narcolepsy and friend. I would like to introduce you to Bernadette.

Q: What type of narcolepsy do you have?

Bernadette: Type 1.

Q: How long have you been diagnosed?

Bernadette: Been diagnosed since 1999, so 23 years.

Q: From your first symptoms to the diagnosis, how long was it?

Bernadette: My first symptom that was not just a "maybe it’s just too much work/life" was cataplexy. My knees buckled when I laughed while pregnant at work in 1991. It was 8 years [until diagnosis].

Q: When and what happened when you had your lightbulb moment and you knew something was wrong?

Bernadette: It was between the cataplexy and complete fatigue with weight gain.

Q: Who supports you?

Bernadette: Financially I have disability [and] social security. Emotionally, my friends [and] my family support me. It's been a fight at times, and a realization for them, since my symptoms and other diagnosis were long coming and judgment was passed purely out of lack of information.

Q: If you could give advice to someone newly diagnosed, or someone with a family member newly diagnosed, what would it be?

Bernadette: For families or friends: First, understand that this is what has been happening. It is not new or recent, but usually years of behaviors. Understand that this is the person you love and/or care about, and that with medication, yes, hopefully they will be able to gain a little control, but they will not be cured. Be patient and accepting. Get on any social media and read some of the comments to see that it's real. No one wants to be this way any more than a diabetic or other life-long diagnosis.

To a person diagnosed: Join a group, find your worst days, keep a journal... Look at the lengths you have gone to in an attempt at "normal." Don't do that anymore. Understand this is the new you (who you have been for possibly years), [and] accept that worst part of all of it; out-of-control sleep, unexplained fatigue... Let yourself off the hook. Seek a grief counselor. Knowledge is power. Connection with others like yourself is imperative and honestly a lifesaver. Take the meds after you identify your worst. It's always a great day if you can have a better day than the worst. Lastly, meditation and positive energy.

Thanks for sharing some of your narcolepsy story with us, Bernadette.