#NarcolepsyStories: Louie Gray

I am 31. It is now very obvious to me that I have had narcolepsy and cataplexy my whole life. I am still waiting for a formal diagnosis. It sickens me to think of the adults – the parents, the teachers, the doctors – who watched a child unable to wake up, who looked on at a child who’d collapsed and did nothing but scream at him.

Over the years, I have been diagnosed (wrongly) with just about everything, told I have anaemia, chronic fatigue syndrome, fibromyalgia, an unknown mental illness. When I asked my GP about sleep specialists, she told me there was nothing to be done but to go away and try to “manage my energy levels better”. At one extraordinary appointment, more than 15 years after being diagnosed with anaemia, my GP revealed that my blood tests had never indicated this after all. I was furious. If not anaemia, what was causing my extreme sleepiness, why were my muscles going weak and why would I collapse seemingly randomly? She simply had no explanation and no interest in helping me find one.

I have been diagnosed (wrongly) with just about everything, told I have anaemia, chronic fatigue syndrome, fibromyalgia, an unknown mental illness.

It was several months after this that a friend suggested I look into narcolepsy. I visited the Narcolepsy UK website and recognised my symptoms immediately. Not only did it account for my inability to stay awake for more than a few hours at a time, it accounted for the muscle weakness, the so-called “clumsiness” and fainting I’ve experienced my whole life. After calling the helpline, I received information leaflets about narcolepsy and cataplexy, worksheets to track my symptoms and suggestions on how to approach my doctor. As a result, I finally got referred to a sleep specialist, but because of COVID-19 this appointment has been put on hold.

I have waited my whole life to get help. I am still waiting.

I am an artist and get a lot of inspiration from my vivid narcolepsy dreams. The image accompanying this post, entitled Dream Rose Town, is a place that frequently comes to me in my sleep. www.lougraves.com.

29th September 2020

This post is part of Narcolepsy UK’s #NarcolepsyStories project, where people with narcolepsy write frankly about what it’s like to live with this debilitating disability.

Narcolepsy is a spectrum disorder that affects everyone differently. However, people with narcolepsy will always find they have a lot in common, sharing their experience of the difficulty in securing a diagnosis, the years it takes to find a suite of medications that helps combat symptoms, the effect that extreme sleepiness can have on education, work and relationships and impact that cataplexy can have on confidence.

It is our hope at Narcolepsy UK that the #NarcolepsyStories project will contribute to our vision as set out in the #NarcolepsyUKCharter to provide the respect, care and support that people living with narcolepsy and their carers deserve.

How can you help?

  • Spread the word by sharing these stories on your social media channels, using the hashtag #NarcolepsyStories.
  • Put your signature to the #NarcolepsyUKCharter.
  • Make a donation to Narcolepsy UK.
  • Contribute your own story to the project by sending an email to stories@narcolepsy.org.uk.