One of the challenges of narcolepsy and idiopathic hypersomnia (IH) is the feeling that – even with the best will in the world – nobody really understands what you are going through.
At one level, there is some truth to this. Hypersomnias like narcolepsy and IH are spectrum disorders, so everyone’s experience of these sleep disorders is completely unique. On the other hand, the very same spectrum nature means that everyone with a diagnosis of narcolepsy and IH has a lot in common.
For many with narcolepsy or IH, meeting up with others with a similar diagnosis is an incredibly empowering experience. Heather Korbey, a long-standing supporter and volunteer for Narcolepsy UK, remembers the first time she met others with narcolepsy. “At my first Narcolepsy UK conference, it gave me such strength to be surrounded by people like me. I am more confident about talking openly about narcolepsy. Improving the awareness of it amongst the general public is so important and it’s now part of my everyday life,” she writes. Henry Nicholls, author of Sleepyhead and Narcolepsy UK trustee, describes the annual conference as “easily my favourite weekend of the year.”
Narcolepsy UK’s Volunteer Coordinator Liam Sloan works hard to arrange “meet-ups” all around the country. “Meet ups bring people living with narcolepsy and their supporters together,” he writes. “At meet ups, people can talk about their experiences with others who understand what they are going through. Many people attending have never met another person living with narcolepsy before! It is an extremely enjoyable experience; we consistently receive positive feedback from hosts and attendees. You don’t need to come alone, you can bring family/friends/careers for support.”
As part of the Narcolepsy UK charter, we are committed to supporting those with narcolepsy and their families in many ways. You can search forthcoming events for details of any local meet ups and if you think you might be able to arrange one in your locality, please send Liam an email liam.sloan@narcolepsy.org.uk.