"I can power through a busy day, but my body demands two hours of sleep when I get home." Photo: Stocksy
One afternoon in February, I waited at a bus stop for 40 minutes. But I was not waiting for a bus. I was waiting, completely conscious but physically incapable, for my temporarily paralysed muscles to regain their strength, so that I could move my body.
I have Narcolepsy, an incurable neurological disorder preventing the brain from regulating sleep patterns normally, blurring sleep and wakefulness with symptoms that include:
- overpowering attacks of daytime sleepiness
- Cataplexy, which is the sudden loss of muscle strength, triggered by emotions
- disrupted night time sleep
- sleep paralysis
- hallucinations when going to sleep or waking up
That particular Wednesday, I was affected by the worst Cataplexy attack I have ever experienced.
As a teenager, sleep overwhelmed me in nearly every class, watching TV, studying, even standing on trains- any moment I was still for more than a few minutes. No matter how I resisted, my vision would blur, speech would slur and confusion would cloud my understanding of what was going on. I would be overcome by the powerful drag of sleep. Ashamed of my failure to control it, I tried desperately to hide just how debilitating it had become.
By the time I was 19 and at university, my sleepiness was impossible to hide, and other people began noticing the way my cheeks and eyes drooped, knees buckling whenever I laughed.
It was terrifying to know that my consciousness was slipping out of my control. Sudden episodes of weakness confirmed that there was a disconnect between my mind and body. Attempts to conduct a normal life seemed doomed to fail and I spent my days in a haze. I needed help.
When a neurologist finally offered a diagnosis, the weight of failure lifted from my shoulders. Knowing the medical nature of my condition provided the security to talk about my symptoms free from judgment, and led to strategies for managing life with Narcolepsy and Cataplexy, including medications for both conditions.
Unfortunately, medication is not a magic solution. It partially controls my symptoms but also leaves me with unpleasant and exhausting side effects. The reality of Narcolepsy is that symptoms vary hugely between patients, so treatment is determined by educated guesses, and trial and error of medications and lifestyle adjustments. I learned to take ownership of my wellbeing, confident in my knowledge of my body.
Seven years ago, pre-diagnosis, part of my personal ontology was that I was lazy; my somnolent existence was shameful and personal inadequacy to blame. Many people have difficulty reconciling the woman they see with society's ingrained expectations of chronic illness or disability.
"It's not really a disability though. You're so educated/competent/confident!"
Indeed, it has taken me the better part of six years to accept that both can be true of me, and to identify as a person with a disability.
While other people struggle to understand my disability, it remains hugely pervasive in my daily existence. For example, as a part-time worker (because I cannot manage full-time work) people are always asking what I do on my days off, imagining and envying long days of leisure or adventure. They ask in conspiratorial tones: so, what are you planning for your day off tomorrow? The disappointing reality is that I rest and recover.
I can power through a busy day at work, but my body will demand two hours of sleep when I get home.
Over Easter, there was the usual banter between my brothers and I, but everyone also knew to check that I was awake before directing a question or comment my way.
I can confidently speak to a room full of people, but anticipating the punchline of a joke, my muscles will falter and I may crumple to the ground in a Cataplexy attack.
I can travel the world, road-tripping across America in a technicolour van with my best friend, but some days I will sleep for six hours straight while she drives across the desert.
Determined and ambitious, I have a Bachelor of Psychology and am completing a Masters degree, but my incapacity for full-time (or sedentary) work limits my employment prospects and earnings.
I can kick up my heels at a party, but my friends know to look out for me while I take a break to sleep, often right there in the middle of the fun. Thankfully, my friends are happy to correct onlookers when they loudly judge me to be passed out drunk. And the same friends are loyal enough to stick by that story, even when I have had a few too many red wines!
I can cycle to the local shops for a really delicious Nutella milkshake, but I might have to wait at a bus stop for 40 minutes, until a cataplexy attack passes.
My life differs in often silent but profound ways from my peers. I live a part-time life. But in so many ways, I am a very normal twenty-something.