SomnusNooze
There is no greater agony than bearing an untold story inside you—Maya Angelou
Your personal story about hypersomnia is a powerful means to raise awareness of a journey with a rare chronic disorder. Although each person’s experiences are unique, people with hypersomnia share similar stories of coming to terms with symptoms; visiting numerous healthcare professionals for answers; coping within your family, among friends, and at work and school; and finding a way to endure with the use of medications, naps, and unique coping skills.
Your story helps to educate healthcare professionals
The more than 1000 subscribers to SomunusNooze include healthcare providers, pharmaceutical company executives, supporters, and, of course, people with hypersomnia—all of who see, hear, and feel the stories that we share. As our readership grows, our reach also increases, with the hope that, one day, the symptoms of hypersomnia will be universally understood, properly diagnosed, and effectively treated. Universal awareness begins with you and your story.
Help us to shed light on the hypersomnia journey
Insight into the symptoms of hypersomnia, the road to diagnosis, and treatments tried and failed, as well as the social, physical, and financial impact from the perspective of someone with hypersomnia—or from a supporter’s perspective —can be a powerful qualitative tool to improve the medical and social outcomes of people with hypersomnia.
Please help to educate others and raise awareness of hypersomnia by sharing your journey and the impact of hypersomnia upon your daily life. Visit https://www.hypersomniafoundation.org/understanding-hypersomnia/share-your-journey/ to submit your story. By sharing your symptom-related challenges, you can help to spark ideas on ways in which healthcare providers can improve care and your family members, coworkers, and friends can provide support. For those with hypersomnia, reading others’ personal accounts helps us know that we are not alone on this journey.
The following list of topics might spark an idea for your journey story, but feel free to write about any hypersomnia-related subject, whether as a narrative, poem, song, or other form. Please try to keep your story to 750 or fewer words, and, if you like, you can also upload a photo or artwork to illustrate your story.
- The path to a proper diagnosis
- The bravest moment of your life
- What makes your supporters special
- Why you can succeed in life
- The experience of being lifted up by a supporter
- A surprising turn of events you experienced
- If you could change someone’s hypersomnia experience
- If you could have a do-over
- Words that prompted hope
- Your favorite time with family
- An awkward social moment
- A brain fog story
- The journey as a supporter
We learn best—and change—from hearing stories that strike a chord within us.
—John Kotter
