Charlie Balloqui, a 23-year-old from Portsmouth, lives with type 1 narcolepsy, a condition that causes uncontrollable sleepiness and muscle weakness. She can collapse to the floor while remaining fully conscious and unable to speak or move. Charlie says people often assume she is lazy or accuse her of faking her condition, and she has even been reported to management at her current job managing a dance studio.
Falling asleep in dangerous places
Charlie describes falling asleep in many everyday settings: “I fall asleep in the nail salon, in the dentist, on public transport, in workout classes, on first dates, at restaurants and at my desk at work.” She has also fallen asleep on the toilet for hours, in the front row of a theatre show, on a lilo in a swimming pool, and during her GCSE exams.
Some situations have been dangerous. “The bath isn’t a great one, so my mum doesn’t like me taking baths,” she said. “I’ve fallen asleep a couple of times with food in the oven and woken up to smoke alarms, which is definitely dangerous.” On one occasion, she fell asleep on a bus until the terminus, and the driver shouted at her to get off, calling her lazy and stupid.
Years before diagnosis
Charlie first saw a doctor at age 12 after repeatedly falling asleep at school, but she was told she was experiencing the “normal changes” of growing up. She recalled: “People at school said I was faking it or just being lazy. Even my parents would get annoyed at me for being lazy when I was sleeping all the time.”
She was eventually diagnosed with type 1 narcolepsy shortly before her 18th birthday, after her mother repeatedly pushed doctors to investigate further. Charlie also experiences cataplexy, a sudden, brief loss of voluntary muscle control triggered by strong emotions such as laughter, surprise, anger, or sadness, which can occur in people with type 1 narcolepsy.
Living with the condition
Charlie’s symptoms vary from day to day. She said: “Sometimes I have good days and I forget I have a disability, and then it hits me on other days.” She is not allowed to drive legally, and cataplexy is strongest when she is shocked or sad. During one episode, after being told a relative had passed, she dropped to the floor but remained awake and conscious for a couple of minutes.
Despite the challenges, Charlie works three days a week managing a dance studio and spends the remaining days auditioning. Her employers are supportive, and the office has a sofa where she is allowed to nap on difficult days. She met her partner Patrick Asikaiwe, 25, two years ago, and he researched narcolepsy before their first date.
Charlie previously took methylphenidate to stay awake but stopped this year, preferring to manage her symptoms through exercise. She said: “I very much use humour to get through it. I think having narcolepsy forced me to quit my desk job and go and chase a life I love. So in a way, I’m grateful for it.”
