My story: Lisa

lisamaria headshot.jpg

Narcolepsy is a rare long-term brain disorder that causes a person to suddenly fall asleep at inappropriate times. The brain is unable to regulate sleeping and waking patterns normally, which can result in excessive daytime sleeping, sleep attacks, cataplexy, sleep paralysis and excessive dreaming and walking in the night. This is my condition and while it doesn’t cause serious or long-term physical health problems, it can have a significant impact on daily life and be difficult to cope with emotionally.

One of my first memories of the condition was when I was twelve years old. I had opened my eyes, only to see my teacher looming over me: “Is there something you would like to tell me?” she asked. I had just overcome a sleep attack, and I had no clue where I was or why everyone was staring at me. I burst into tears, and my mother had to explain to the teacher that I was neither lazy nor drugged - I was sleepy. 

This was just one of many symptoms, which my friends learned to recognise. During laughter, my knees weakened, my head would drop and my speech slurred. An exceptionally funny joke could send me into a motionless state of paralysis on the floor for up to a minute. Friends were often amused but also alarmed by this, and they learned to catch me before the fall. 

At night, I was restless - haunted by vivid nightmares and physically paralysed for what felt like hours on end. Terrors visited me during the day as I retreated to the school toilets to sleep, leaving me confused and frightened. Reading, which is my favourite thing in the world, became a frustrating, demanding experience, and I frequently fell asleep during stressful exams. 

Teachers acknowledged my situation, but since my grades were fine, they didn’t see the need for support. Some doctors suspected that I was depressed, but the diagnosis wasn’t right. I tried alternative diets, acupuncture, meditation and every possible variation of a healthy lifestyle. Eventually, everyone came to the same conclusion: the sleepiness was just a phase - it would all go away after puberty. 

But it didn’t.

It wasn’t until I was preparing for an exam about mental health, I stumbled across sleep disorders in a search engine. As I dug deeper into the digital archives, I discovered abstracts that perfectly addressed my specific symptoms. I eventually gained the confidence to attend a sleep clinic where I completed two tests - the polysomnogram (PSG) and the multiple sleep latency test (MSLT). I was diagnosed with type 1 narcolepsy with cataplexy.

I don’t think anyone likes labels or being put in a box, but, personally, I found the diagnosis to be an enormous relief. I consider myself to be very lucky to still be able to live a relatively normal life, and I am well aware that many others do not have this luxury. As I now engage openly with people around me, narcolepsy has become a channel for empathy, conversation, and constant learning. Most importantly, I have gained one great source of strength; knowing that I am not alone.

A final anecdote to prove this point; I still retreat to a shower room to sleep during a working day. It’s neither comfortable nor glamorous. I have recently learned that I am not the only one who has to resort to this cold, cramped room. This room also functions as a safe spot for breastfeeding, praying, taking medication and meditating. 

Perhaps it’s time for us all to give each other a little more space.