A person with narcolepsy stepping out of a larger-than-life open book to speak at a podium.

Where Do I Start? How to Share Your Narcolepsy Story

“I want to share my story, but don’t know how to start…”

If this sounds like you, you’re not alone. We’ve heard people say this quite often in the narcolepsy community. Getting started can be the hardest part, especially if this is the first time you’ve ever shared your story.


At first, sharing your story can be scary. You might wonder how others will respond, or if they will respond at all. Or, you may worry that nobody wants to hear what you have to say… We can assure you that isn’t true. We read every story that gets submitted to Narcolepsy.Sleep-Disorders.net. Each and every story has a tremendous impact and helps raise awareness of the challenges of living with narcolepsy. You never know who will read your story, and how they might be able to relate.

After finally taking the leap, many people will say that they can’t believe they waited so long to share their stories. Some will even say that sharing their story is one of the best things they’ve ever done.

Ready to share?

We’ve gathered the components that make up many narcolepsy stories and outlined some pointers to walk you through sharing your story. While there isn’t a single format or structure for a story, we hope these help you with sharing yours (whenever you are ready, of course). Let’s get started!

Introduce yourself

Start with a short introduction about yourself. Remember, your audience does not know who you are, so include relevant aspects about your background or interests. How long have you been living with narcolepsy? If you’ve been diagnosed, share about that experience. Some other information you may want to share includes your diagnosis journey and how long it took to get a diagnosis, who diagnosed you, and what testing led to your diagnosis.

Share your symptoms and treatment

Many people will open up about their symptoms, and what they’ve been doing or trying to manage them. They talk about their visits to the doctors, and what they are learning about their condition. What treatments, if any, are you using and how has that been going?

Say how you are doing today

The end portion of the story usually includes a reflection or an update on how they are doing. Have you made any progress since the beginning of your journey, or have things gotten worse? What mental hurdles are you facing? Have you found support online or in-person? Are your friends and family supportive of you? How has narcolepsy impacted your professional life? What are your hopes or plans for managing your narcolepsy?

Don’t forget to make it personal

No two stories are the same. Be sure to incorporate some personal touches to make your story unique to you. Whether it’s your raw emotions, sense of humor, or writing your stories like a poem or song, your story can be as unique as you are.

Click here to share your narcolepsy story on Narcolepsy.Sleep-Disorders.net.

We look forward to reading your story!
Narcolepsy.Sleep-Disorders.net Team

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