"A mental and physical battle "

Without support, the challenges of university can be even tougher on narcolepsy sufferers

3rd December 2018

Whether it’s work, studying or something else, we all know how badly a lack of sleep can affect our capacity to be productive. You wake up exhausted and spend the day in a lethargic daze, struggling to maintain focus on whatever you need to get done that day.

This is what people with narcolepsy go through day in and day out.

Narcolepsy is a rare neurological condition that affects the brain’s ability to regulate the normal sleep-wake cycle. It can lead to disturbed night-time sleep, excessive daytime sleeping and cataplexy — a temporary involuntary loss of muscle control.

Thereare approximately 30,000 people who have narcolepsy in the UK, according to research conducted by Narcolepsy UK, though it is believed that the majority have not been diagnosed. Narcolepsy UK operations manager, Nicola Rule, explains that in many cases, people who display symptoms are told they are just “teenage traits” or that they have been working too hard. It’s not uncommon for patients to wait more than five years for a diagnosis, says Rule, who adds: “It is remarkable how many GPs have little knowledge of the illness.”

I always got eight hours of sleep, did lots of exercise and ate well, and I was still permanently tired

This was the case for University College Dublin student, Aine Keogh, who was diagnosed over a year ago at 18-years-old. Before diagnosis, Keogh says, “People always thought I just liked to sleep.” But she knew that something wasn’t right: “I always got eight hours sleep, did lots of exercise and ate well, and I was still permanently tired.”

Keogh describes each day in the period when she was completing her leaving certificate (the equivalent of GCSEs in Ireland) as a “mental and physical battle”. In search of answers, she began looking up her symptoms online, and she found they matched the description of narcolepsy and cataplexy. “It was hard for me to explain to my family that I genuinely think I have this condition, but I went to my GP and she sent a referral letter to a sleep specialist. I passed all the tests with flying colours.”

Narcolepsy UK typically supports around 1,000 people with narcolepsy, and their family and friends, at any one time. It has been in operation for over 30 years, and many of the people it supports are university students. Based on her experience of supporting these students, Rule says that they find it “extremely difficult to study in the traditional method or using a PC as these tend to make them more-sleepy, which affects their learning”.

As the weeks went on and the work-load increased, it was getting harder and harder

Durham University student, Teya Staniforth, has had narcolepsy for seven years. In her first year of university, she found it difficult to study and keep concentration for long periods of time. She says she had “at least one nap a day during lectures” and that “keeping to deadlines was difficult”. When Staniforth realised there was a disabilities support team at the university, she met with them straight away. This made studying for Staniforth a little easier, as she was given “extensions on coursework, more often than other people, a Disabled Student’s Allowance (DSA), and recording software that reads articles, reports and essays [to her]”.

Keogh’s experience was similar: “In the first few weeks, I thought I could power through and that I didn’t need help from anyone, but as the weeks went on and the work-load increased, it was getting harder and harder.” Keogh, like Staniforth, decided to make use of the resources available at the university. “I received access to a respite room where I can take naps and a recording device to record my lectures so I don’t miss anything.” Now, studying isn’t as difficult as it was. “I have a strict study plan, and I take nap breaks and my medication. I can now function much better than I ever have before.”

Narcolepsy UK recommends that universities offer those with narcolepsy additional notes, scribes and voice recordings, which would allow students to recap lectures and seminars, and make studying much more manageable. These can be particularly helpful for a student suffering from “micro-sleeps” which Rule describes as “short periods of zoning out where concentration may be lost”. It is also necessary for students to have a “buddy or supporter” to help keep track of lectures, or assist if they need to find somewhere to nap. This helper’s most important responsibility, Rule explains, is “to ensure the student is in a safe place if they have a cataplexy attack”.

Crucially, this also applies during exam period, as Staniforth explains: “I have a DSA mentor who helps with my organisation and any other issues I might come across.” Support is offered and steps are taken to make exams more manageable for narcolepsy sufferers too. Staniforth is given “extra time and rest breaks” and is in a “separate room with air con”, which is helpful to maintain wakefulness and allows the invigilator to watch for signs of “micro-sleeps”. If this happens, the clock can be stopped and restarted later, which allows Staniforth to have the time she needs to sleep and complete her exam afterwards.

When it comes to exams, conditions have to be right, so as to make sure that someone’s grades don’t suffer as a result of their condition. According to Rule: “The exam room should be light and airy, with water on hand and the invigilator should be aware of the symptoms they are watching out for.”

Once my friends knew why I was sometimes anti-social, they were very supportive and would always try and include me

Narcolepsy doesn’t just present problems affecting the educational side of university; maintaining a social life can also be a struggle. Keogh explains, “Socialising is a difficult one. I feel like I can’t go out on late nights because if I don’t get enough sleep, I can barely function the next day. It just isn’t worth it.”

Staniforth recalls the impact narcolepsy had on her social life at university: “I really enjoyed first year, but it was hard to socialise as I was sometimes too tired, especially during freshers’ week. Making friends took a lot of effort, however, being in catered halls helped me make friends as everyone sat together and ate. Plus, it took the pressure off of cooking for myself.” After Staniforth had settled in, she was able to tell her friends that she had narcolepsy. “Once my friends knew why I was sometimes anti-social, they were very supportive and would always try and include me.”

As well as friends, it’s important for teaching staff at universities to be supportive and understand how to help students with narcolepsy. As it stands, the availability of this kind of help for student narcolepsy sufferers is mixed, according to Rule. “Support from teaching staff is variable and some people suffer with no support. It ought to be available from student services, but it may have to be fought for. However, we have also had a few calls from university lecturers asking for advice as to how they could help their students and that is a joy to hear.”

In Keogh’s case, at least, the level of support offered by student services was better than she expected: “I was really surprised at how helpful and how willing they were to make my life easier.” The hardest aspect of university life as a narcoleptic, she says, is having to explain what is an invisible condition, but “with the support of close friends and family, it is easier”.

For anyone who has narcolepsy and is starting university soon, or already studying, Staniforth stresses the importance of seeking the support available: “Meet with the disabilities support team ASAP!”

Support for anyone with Narcolepsy, including university students, is available from Narcolepsy UK, which offers free and confidential advice via helpline or email.

Main Image: Jessica Cross 

3rd December 2018