'Sleepiness Is Not Laziness' The Way We Act in Our Dreams Is Proof of That!
The narcolepsy community has long used this phrase. This is because, unfortunately, a lot of people still think of sleepiness this way. So many of us are shamed for our sleepiness, with people perceiving it as a character flaw.
With this in mind, we are often told things like: "If you only tried harder..."
Even when people believe I have narcolepsy, I can sometimes feel this implied by people in a less overt way.
People do not understand the struggle to stay awake
Feelings of frustration and isolation can mount up, and it can feel like no one in the world understands. You are trying your hardest but the sleepiness is just too much!
What's met with some resistance at times is our descriptions of how hard we try to keep awake. Both getting people to understand and the effort of staying awake itself can be something like trying to swim right up to Niagra Falls. I think that the way we act in dreams might be a good way of explaining it.
REM sleep is not restful
Since my symptom onset at around 13, I have found it incredibly difficult to get up in the morning. I have often had dreams in between snoozing my alarm. In these dreams, I will, for example, get up, brush my teeth, wash, put on my clothes, brush and tie my hair back, and pack my bag ready to leave the house. I believe I am really doing these things! (like, what a boring dream!)
Then, I wake up at the next snooze of my alarm, still in bed and running late. Often this can repeat more than once in a morning. This is because people with narcolepsy, unlike "regular" people, can go into dream or REM sleep almost immediately after falling asleep. A person without narcolepsy would need to go through other stages of sleep to reach REM, after around 60 to 90 minutes.1 People with narcolepsy never wake up feeling well-rested because we rarely go into the deeper, restorative stages of sleep.
Knocking out my to-do list in my dreams
Being part of various narcolepsy communities, I have virtually met a lot of people with narcolepsy who have experienced the same phenomenon of dreaming of getting up and doing mundane tasks. It’s a fitting representation of how much we often consciously want to get up and do the activities we need to do but are involuntarily kept in the dream world.
Resisting sleep attacks
If you ever see a person with narcolepsy with their head bobbing up and down, they are trying so hard to keep awake! I can’t tell you how hard it is to resist a sleep attack. As people with narcolepsy, we do things like this all the time. It’s hard for people to notice.
To the untrained eye, swimming against the current can look like someone is not moving anywhere. In reality, though, we are often using an enormous amount of effort just to stop ourselves from being swept away. When we are swept away with sleepiness, it’s not through lack of trying.
Automatic behaviour: the opposite of laziness
Another good example of how people with narcolepsy often try so hard to stay awake is that sometimes our bodies actually continue to do things while we are half asleep and not conscious of our actions. Many times I have looked down at my notebook after a sleep attack and found I have been writing nonsense and scribbling on the page. My notebooks are full of such scribbles! This is because my body continues to automatically "write" while half asleep.
I have crossed the street without looking while in this state and have been lucky that I've never been hit! There are infinite examples of this in our community, and to me, this displays the opposite of laziness. Even on a subconscious level, we are trying our utmost to remain active in the waking world. We exist in a fragmented and non-binary sleep-wake state, drifting between different levels. We are always in between them and never fully awake or fully asleep.
Resisting sleep is not a good idea
During my sleep study, the sleep doctor told me that for "regular" people, resisting daytime sleepiness can be helpful. This is because it can pass, and sleeping during the day might affect their nighttime sleep pattern, so it is better avoided.
However, since people with narcolepsy don't experience the same kind of sleepiness, resisting it is not healthy. Our bodies are essentially shutting down and forcing us to sleep because they are so deprived of restful sleep. So, whilst much of the time we are trying very hard to stay awake, it’s not actually good for us to do that constantly.
When trying harder backfires
The pressure from people around us as well as ourselves to "try harder" can lead us to push our bodies past their limits and to (further) burnout. It can, additionally, place undeserved shame on our shoulders.
That’s why "trying harder" might actually be damaging and even dangerous for us! The reality is, we need to sleep more than a "regular" person to function on a basic level. Additional pressure to prove that we are not lazy takes up energy we just don’t have.
Stress and pressure increaeses symptom severity
Pressure to fight our symptoms can actually be a road to an increase in their severity. Through my moderation in this community, I have seen many people with narcolepsy report that stress and lack of sleep from fighting their symptoms increases their cataplexy symptoms as well as their sleepiness.
Stress and pressure have also been connected to an increase in hallucinations and sleep paralysis (and hallucinations with more terrifying subject matter). I have both heard this anecdotally and experienced it myself.
Less resistance for better health
Personally, when I started to accept narcolepsy as a part of myself, my mental health and even some of my narcolepsy symptoms began to improve. Instead of working against my symptoms and against my body, I am beginning to work with it.
I am learning that it's better to respect and listen to it and not push it past its limits. So whilst it's safe to assume that we are trying our hardest, we are also not lazy for listening to our bodies and sleeping when needed. Moreover, resisting our symptoms less could be better for our overall health in the long run.
How has narcolepsy impacted your ability to work?