In the run-up to World Narcolepsy Day 2020, Narcolepsy UK invited people with narcolepsy and their families to contribute their stories of what it's like to live with narcolepsy or with a person with narcolepsy.
Thank you to all those brave enough to share your experiences. Some of the stories make for hard reading and some are uplifting, but we hope that together they capture the spectrum nature of this disorder.
These accounts touch on many of the key points in The Narcolepsy UK Charter, including the right to an accurate an early diagnosis, the right to an education and the right to employment. Most importantly, perhaps, all those who have contributed are helping Narcolepsy UK in our core goal to see that people with narcolepsy live in a society that understands and recognises the impact of narcolepsy on themselves and their families and carers.
If you would like to share your experience of narcolepsy (and we are keen to hear from friends and family of people with narcolepsy too), please send an email expressing your interest to email@example.com.
"Narcolepsy UK provides a whole community I can talk to and I know I will be understood and helped. It has given me back a sense of normality. I don’t participate in the gatherings. I don’t have the confidence. I plan to one day."
"Narcolepsy UK is an outstanding charity that has played a vital role in my life over the last few years. I love interacting with people with narcolepsy online. It is a massive sense of relief to know I am not alone."
"Narcolepsy UK has been such a great help during my journey because I have been able to connect with people who know exactly what I've been through. As a teenager and even now, it gives me strength to know that I am not just a freak and that there are other people out there with the same condition as me."
"I visited the Narcolepsy UK website and recognised my symptoms immediately. Not only did it account for my inability to stay awake for more than a few hours at a time, it accounted for the muscle weakness, the so-called “clumsiness” and fainting I’ve experienced my whole life."
“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.”
“Over the last ten years, Narcolepsy UK has supported me and my family loads, particularly helping my parents to understand narcolepsy and cataplexy and how best to help me. The charity also helped my parents explain about my condition to my secondary school and get support in place before I even arrived.”
“After reading more about the condition on the Narcolepsy UK website, I decided to book an appointment with my GP to talk about my sleepiness… My questionnaire scores were unusual enough to refer me to a specialist.”
“I used the Narcolepsy UK fact sheet at both college and university to give the health assessors a better understanding of narcolepsy and to inform them of the reasonable adjustments that could be made to support me.”
“The information on the Narcolepsy UK website with regards to symptoms, diagnosis, what medication can help, what can be done to best help manage the symptoms and improve sleep hygiene has helped me and my family massively.”