Narcolepsy and 'Mosquitos’ Part 1: Everyday Phrases That Can Sting When You Have Narcolepsy
Having narcolepsy is a daily struggle. One of the less often spoken-about difficulties can come in the form of ableist microaggressions.
A microaggression is a “subtle, often unintentional, form of prejudice. Rather than an overt declaration of (eg.) racism or sexism, a microaggression often takes the shape of an offhand comment, an inadvertently painful joke, or a pointed insult.”1
Microaggressions are like mosquito bites
Though the term originated to describe racial microaggressions, the definition has expanded to include other types of unconscious prejudice, such as ableism. They have been described as like mosquito bites, kind of manageable if it happens once in a while but can become somewhat debilitating when it happens all the time.2
They are often not meant badly and can be accidental. We are all probably guilty of making them to a member of one marginalised group or another, or to someone belonging to multiple (or an intersection) of different groups at some point (Someone’s intersections could be e.g that they are a black, disabled queer, trans woman and have microaggressions aimed at them for specifically belonging to all these groups).3
Awareness is key
The key is awareness and willingness to learn to alter the way we talk (and think) to avoid making these "bites." Mentioning such bites to the mosquito can risk a defensive backlash:
Well, I’m no Count Dracula! You should think about the real bloodsuckers (ableism) in the world. Stock up on garlic, that’s what you need!
Mr. Mosquito (yep, there's a couple of bites in there!)
This can take up a lot of precious energy, or spoons to argue with and it’s worth noting that we don’t owe it to people to educate them about this. I’m hoping by writing this article, I might save some people the effort of explaining it themselves!
Some common narcolepsy-related microaggressions I hear:
I wish I could nap.
Napping is not a privilege when it’s a necessity!
I’m so tired too from my job and/or having children.
I understand that people can end up sleep-deprived from working long hours or having children, but it’s really not the same as having a chronic illness like narcolepsy. It can feel like the person is saying: "Well everyone goes through that, if they can deal with it, why can’t you?" even if that’s not their intention.
You must be well rested.
A close friend said this once. I had previously described my experiences and that my sleep was not restful in detail but it seemed she still didn’t understand this.
You enjoy your bed, don’t you!?
(Once, I got a pair of pyjamas as a gift that said "I heart my bed"!) The thing is, I wouldn’t say I love my bed any more than I love drinking water. It’s just something that I depend on. I wish I didn’t need to depend on it so much!
Have you tried yoga / meditation / essential oils / vitamins?
Assuming you haven’t tried everything you can and that such simple things could cure your incurable illness.
Could be worse.
This is offensive both to the struggle I go through and to people who have what people categorise as "worse" conditions.
You just don't go to bed early enough.
Hmm, well I typically sleep at least around 12 hours a night so that really should be enough sleep if, you know, I did not have a sleep disorder!
When it’s afternoon, if I have slept a lot and just gotten up and see my housemate/family member for the first time that day, I have had this said to me a lot. We both know it’s not morning. I know that I have slept a lot. I wish I didn’t have to. Please stop this passive aggression, I am doing all I can not to sleep as much.
Am I that boring?
This one is often said in a jokey way but it can be a passive-aggressive bite, taking your sleepiness personally and it can appear like it is trying to extract guilt from a person for not staying awake. You could be the most interesting person in the world to me, you could be my all-time favourite musician talking directly to me and I could still fall asleep, I really can’t help it!
Microaggressions in everyday phrases – stay tuned!
These are all more overt mosquito bites, but what about when everyday language and phrases can feel like them too? Even though most of the time the people saying them don’t mean harm and don’t recognise the sometimes harmful metaphors in the language, it can still itch like hell! Check out part 2 of this series, which looks into some of these everyday phrases.
Have you ever experienced any of these microaggressions? Do you respond to them or do you feel this takes up too much energy? I would love to hear about your experiences!
Do you feel that your doctor understands narcolepsy?