Conducting My Own Narcolepsy Research

I recently finished my master's degree in health psychology. I'm so happy because I achieved a distinction which I am incredibly proud of. Completing a master's degree requires a lot of hard work and determination on its own — add narcolepsy into the mix, and it makes it even more of an achievement (in my opinion).

My narcolepsy was also particularly bad at certain points, too, and I really struggled at times. Despite this, I actually really enjoyed the course.

Conducting my own research

As part of the degree, we had to conduct our own piece of research on a topic linked to health psychology. I instantly knew that I wanted to do a piece of research on narcolepsy.

I spoke to potential supervisors about my idea, and they said that it was something they would be happy to supervise. I was so happy that I was going to be able to do my own research about narcolepsy. It was also great because, in the process, it meant that I was educating more people about narcolepsy.

Deciding which narcolepsy topics to focus on

I then had to figure out what I wanted to research about narcolepsy. I looked at the previous literature and found that very little research focuses on the experience of narcolepsy and how individuals with narcolepsy make sense of their experiences.

Additionally, there appeared to be no research that looked at the experience of narcolepsy as a whole — from the first experience of symptoms to diagnosis to management. Previous research only looked at specific experiences such as experiences of cataplexy.

As a result, I decided that I wanted to capture the entire experience of narcolepsy, as all of it is so significant. Diagnostic delays are particularly distinct and an important part of narcolepsy.

Utilizing an individualized approach

My research explored the lived experience of being diagnosed with and living with narcolepsy. This was qualitative research that involved a 60-minute interview with 6 people with narcolepsy. I asked open-ended questions such as, "Can you tell me about when you first started experiencing symptoms?"

From this, I then had to transcribe the interviews and analyse them using a specific approach called interpretative phenomenological analysis (IPA). This involved looking at what was important to each individual's experiences and then comparing that across all 6 participants. It then involved an 8,000-word write-up (which was incredibly tough!)

I loved interviewing people who 'got it'

I absolutely loved doing my research project. Doing the interviews with people with narcolepsy was the first time I had spoken to anyone in person (over video call) with narcolepsy. It was genuinely so nice to talk to people who completely got it.

The analysis and the write-up were extremely difficult but so rewarding. I thought the findings were extremely interesting and I was really proud of my research.

Receiving distinction for my work on World Narcolepsy Day

What's extremely fitting is that I received my evaluation results on World Narcolepsy Day, and found out that I got 82/100, which is a distinction! I could not believe it and was genuinely so happy.

I will write a future post that will tell you a little bit about what I found in my research — I found the results extremely interesting and would love to share them with you.