Henry Nicholls
Trustee, Narcolepsy UK
The public perception is that we are always sleeping, but the reality of living with narcolepsy is like living in a permanent state of sleep deprivation.
Think back to the last time you pulled an all-nighter. Recall how rough you felt the next day. Imagine that this was your life, that even after what appeared to be a good night’s rest, your brain was stuck in a state of permanent sleep deprivation. This is, more or less, what it’s like to live with narcolepsy, a serious neurological disorder and disability caused by the loss of a neurotransmitter that orchestrates the diurnal two-step between wake and sleep.
The impact of narcolepsy
The impact of this relentless sleepiness is hard to overstate. Narcolepsy can derail an entire education, locking doors that once might have been opened; it can make it hard to get a job, and then to hold it down; narcolepsy is likely to place strains on relationships with family and friends; and it can strangle self-esteem.
Excessive daytime sleepiness might be
the most obvious feature of narcolepsy,
but it is by no means the only symptom.
Feeling more than sleepy
Excessive daytime sleepiness might be the most obvious feature of narcolepsy, but it is by no means the only symptom. For many, narcolepsy is accompanied by cataplexy, where strong emotions like mirth or joy will cause muscles to give way, and the person with narcolepsy to crumple in a paralysed heap.
A cataplexy attack typically lasts tens of seconds and does not involve a loss of consciousness, but losing physical control like this — sometimes dozens of times a day — can lead those with narcolepsy and cataplexy to withdraw from society and social situations most likely to provoke a collapse.
Narcolepsy is also characterised by disrupted night-time sleep, frequent bouts of hypervivid dreaming, alarming episodes of sleep paralysis and hallucinations — all of which take a cumulative mental toll.
Offering support to people with narcolepsy
At Narcolepsy UK, our mission is to raise awareness of this much-misunderstood condition and offer support to people with narcolepsy and their families. We believe that people with narcolepsy have the same rights to a full and rounded life as any other person. Yet, it remains the case that it can take years to obtain a diagnosis. Some medications can alleviate some of the symptoms, and new drug compounds are in development, but they can be expensive and not everyone can get access to them. We must do more to support schoolchildren and employees with narcolepsy.
