Narcolepsy is a condition characterised by excessive daytime sleepiness (EDS) which is described as a persistent urge to sleep during the daytime. It is a disability that affects around 30,000 people in the UK and approximately three million worldwide. 

The condition has two defined types: type 1, narcolepsy with cataplexy (NT1) and type 2 narcolepsy without cataplexy (NT2).

In a world that seemingly never sleeps, it’s a never ending struggle for narcoleptics to keep up and stay awake. 

Professor Laure Peter-Dexter, a French neurologist specialising in sleep medicine, epilepsy and neurophysiology, discussed a study she conducted concerning the ‘Academic and socio-professional trajectories in narcolepsy type 1’. She described narcolepsy as ‘a chronic, disabling neurological disease’ and said: “The aim of the study was to use a series of questionnaires including the Epworth sleepiness Scale and the Narcolepsy Severity Scale, targeted to discover whether there was a significant impact on the patients lives academically and professionally”. 

The hypothesis determined that ‘Sleep-related symptoms and comorbidities* such as psycho-cognitive disturbances*, and a frequent childhood onset of the disease may negatively impact patients’ careers. However, after completion, the study found that : 

‘Most patients with NT1 manage to achieve their career goals, but at the cost of an effort/reward imbalance. Early diagnosis during childhood might allow a better adjustment to the disease’ 

AND

‘No difference was observed for employment rate and socio-professional category distribution’

This could be reflective of medication being more readily available in this generation than in the past as well as the increasing awareness of the condition.

Whilst on paper and in studies it may seem that those with narcolepsy have the same liberty of choice and freedom as those of us without it, the reality is not so simple. The truth lies in the stories of those who have lived and suffered and survived alongside their narcolepsy, those whose life decisions have been altered by uncontrollable sleep-wake cycles.

Jacquelyn Shields from Ottawa, Canada was diagnosed with Narcolepsy Type 2 at 14 years old in 1975. At the time was the youngest person ever to be diagnosed in Canada but despite it being caught so early, her lifetime with the condition was not made any easier. 

Jacquelyn said she practically slept through school as there were no medications available to her. She couldn’t complete highschool and left with no qualifications.

“There were a lot of things in my earlier years that I wanted to do. I wanted to go into early childhood education, but they only took 30 of the 300 that applied, so you really had to be at the top.”

Getting a job with a living wage with no qualifications can be next to impossible so the only thing she could think of was to return to education . “I couldn’t read, I couldn’t study. Even in my 30s I tried to go back to study through a government funded program, but it was exactly the same.”

“There was no understanding. To most people, especially educators, we were deemed a nuisance.”

A common side effect of narcolepsy is nighttime hallucinations, constantly dreaming and living parallel lives throughout the night. There are medications which are now prescribed to patients to reduce the impact of the symptoms of narcolepsy, which are not specifically for the condition. 

She said: “It was easier for me to transition to this instead of some of the newer medications which were the oxybates*, because I’d already had 40 years of sleep deprivation.”

Jacquelyn began taking Baclofen, an off label muscle relaxant, before bed 8 years ago, alongside the use of THC oils. These fortunately were successful in improving her ability to sleep at night.

Some children aren’t as lucky and are not diagnosed when they are young. There is a comorbidity* between narcolepsy and psychiatric disorders. It is reported that 50% of patients are diagnosed with depression prior to being diagnosed with narcolepsy. Nighttime hallucinations are often interpreted wrongly as schizophrenia and panic disorders are recorded in around 53% of patients with narcolepsy.  

A misdiagnosis not only delays recovery but can increase stress levels resulting in further mental and physical suffering.

Jean-Pierre Decouzon, type 1 narcoleptic, grew up in Clermont-Ferrand, France and first experienced symptoms age nine but first experienced cataplexy* at the age of 12.

“In the first year I saw a lot of specialists, but I was not aware of the cataplexy it had happened to me once” but after specialists not identifying anything medically wrong.”

“The next step was that my parents decided for me to see a psychiatrist because it looked like depression.”

Until the 2000s, knowledge about narcolepsy was largely unavailable. Most people hadn’t heard of the condition and it was common for many people, like Jean-Pierre, to be misdiagnosed for years.

Depending on the support you have available from your friends and family, a misdiagnosis can be an extremely confusing and vulnerable time. 

 “I was from a French family. I had to swallow it. I had no one else to express my feelings to. There was a lot of isolation, and you learn to be by yourself by disconnecting”

A year later Jean-Pierre’s parents sent him to an institution for teenagers with psychological issues for a year. 

The media’s representation of narcolepsy is often inaccurate, usually implementing a humorous angle using sleep attacks for comedic value, furthering the stigma around the condition. The majority of the public are unaware of the harsh reality and the serious impact it has on each sufferer’s life. 

There is no cure for narcolepsy, just better management of symptoms. As more research into a solution for the loss of hypocretin happens, a future where narcolepsy no longer hinders the host becomes possible. 

Narcolepsy UK found that 62% of all sufferers found that their condition prevents them from keeping a job.

Whilst it is very possible for people with either type of narcolepsy to have long-lasting, successful careers and professions, it boils down to the amount of support offered by their employers.

Peshy Trezar, a Kenyan nurse, has been working in an NHS mental health hospital in Liverpool since March 2024. She has only just received her official diagnosis (Narcolepsy Type 2) at the beginning of 2025 at 32 years old, but had known she had a form of narcolepsy since 15, when she had first experienced symptoms.

Before moving to the UK in January 2024, Peshy was a nurse for 10 years in Kenya where she felt supported by her colleagues and employers regarding her condition. However, since beginning her job in Liverpool, she felt a difference in the way her disorder was being handled.

After meeting with an Occupational Health Physician it was confirmed that she is fit to work but needs to take naps whenever needed and that during sleep attacks, workmates should support her by waking her up. 

Despite this Peshy is still on a temporary suspension issued by her manager which does not allow her to work. Before being suspended she said:

“I’m having challenges because they really don’t seem to understand the condition.

“I’ve spoken to my colleagues about what I need. Just to tap me as I am not in a deep sleep. Even just call me saying “Peshy”.

She explained the frustration of not feeling supported in the workplace and how it can often feel like seclusion which is especially hurtful when those around you can’t understand your experience. 

“When I wake up after one minute, everyone is staring at me. They keep reporting me instead of helping me when I have already explained my condition”.

Peshy said that she fears being misunderstood and losing her job because of her condition.

The notion that there is ‘no difference’ between the academic and socio-professional lives of those with narcolepsy and those without seems retired. The everyday struggle to be understood and to not be defined by a condition you have little control over is something that many of us will never have to experience. To change the way you live and the personal and professional decisions you make, to fit the allowance of wake time your brain lends you.

Jacquelyn said: “I consciously chose to not have children, I mostly made sure I never got pregnant because I knew I couldn’t be a single parent. That was a conscious choice”.

The awareness around narcolepsy has grown rapidly with more accurate diagnosis’ than ever. Having accurate knowledge and representations of what narcolepsy truly is will help shape the world into a more accommodating space for narcoleptics to thrive.