"Narcolepsy? What's That?"

The number of people I know with narcolepsy grew greatly during the COVID-19 pandemic. Pre-pandemic I had met a few people with narcolepsy by attending the Narcolepsy UK conferences, but when everyone was locked down for COVID, like the rest of the world I went online. In online narcolepsy support groups, I met new people and made great friendships.

The one downside to having this new community is that I reached a point where everyone I knew or was in regular communication with was a person with narcolepsy or had known me for years. They understood my diagnosis and were used to my symptoms.

Coming out of COVID and getting back to regular life and new jobs and studying again, I was faced with something I had not dealt with in years: dealing with people who have no idea what narcolepsy is.

An experience of falling asleep at the salon

Whilst it is estimated that there are around 30,000 people living with narcolepsy in the United Kingdom, it is still unknown to many people.¹

This may not seem all that important, but it is important, especially when it comes to work and study and getting the support that you need.

Last year, I had my first experience in a long time of dealing with people who did not know anything or understand what narcolepsy was. I was at a new salon getting my hair done, and it was taking a long time, and I started to have sleep attacks. I woke up to distant conversations and laughs about what a long night I must have had.

I found it quite jarring and almost felt they were picking on me. My sister later told me that their reaction was normal, as a really long night out was a common reason that most people would be so tired. That was a more fun assumption for them to make than the assumption of me just being too busy for adequate sleep or working late or too much. I realised then that this was the first time in years I had been in a space where I was having sleep attacks around people who didn’t know I had narcolepsy. That was why I had felt so exposed.

Trying to seek accommodations in barbering school

When I was first considering starting a new course in barbering, I was cautioned by friends and family about lowering my expectations for being accepted into the course, as they may not consider my narcolepsy safe for that particular profession. I was met by shocked faces when, after giving the college the information about my narcolepsy at registration, I was accepted into the course.

A lack of knowledge about what I would need

It was not until the course started that the general lack of societal knowledge about narcolepsy became an issue. Once registered, I immediately inquired about what help the college could provide due to my narcolepsy. I do not think they had ever dealt with a person with narcolepsy before and did not have the tools in place. Whilst there were protocols in place for a blind student, a wheelchair user, or a deaf student, there were none in place for me.

I needed a place to nap during the day when I became too sleepy and exhausted. There was not a space they could think of that could be dedicated to that. I also wanted to have someone who could take notes for me in class, but I did not meet the requirements for that service. It took weeks of meetings and negotiations to finally get things in place to make the course more accessible to me.

I still meet many people who don't know

This is something I find confusing to this day.

I have been living with narcolepsy for over 20 years, and it still amazes me that I still meet many people — including medical professionals — who can look me straight in the eyes when I say I have narcolepsy and say, "Narcolepsy... What’s that?"