What Not to Say to a Narcoleptic
“You must have needed it.”
This is the phrase I have heard for most of my life when I have awakened from a nap.
I never really paid attention to that phrase until after I was diagnosed. People say it out of habit and sometimes do not realize that it can be offensive to a narcoleptic!
I cannot help falling asleep
When I fall asleep during the day, I literally feel like it is time stolen from me! When you have narcolepsy, you cannot help but fall asleep when your brain tells you. It is not from doing anything that will tire you out, and it is not directly correlated with any activities that cause you to be tired.
I can wake up and literally be tired and ready for a nap an hour after I wake! I miss out on phone calls, important appointments, quality time with my family, and life in general.
Our sleepiness and tiredness is not the same as yours
People who do not have narcolepsy attribute being tired to the way THEY feel tired. Some people assume we can control it and we are just being lazy. I do not know how many times I have heard a friend or coworker say, “Oh wow, I think I have narcolepsy too because I get sleepy in the afternoon”.
I know this sounds like a harmless thing to say, however to someone with this disease, it sounds like we are not taken seriously.
We feel disappointment too
If you have a narcoleptic in your life, try to put yourself in their shoes! When you get frustrated at them for canceling an event or appointment, remember that they did this because there was no other option for them. They will be just as disappointed as you!
Narcolepsy is not a punchline
Please refrain from phrases as I listed above as well as any that detract from the seriousness of narcolepsy. This illness has been portrayed by the media as a comical situation. I have seen quite a few movies and TV shows that mention it and it is never in a medical setting.
It is used as joke punchlines and excuses for lazy people. Imagine if the media labeled people with asthma as lazy and made jokes about their health? Narcolepsy is a very real and life-changing disease, and it is truly no laughing matter.
Here's what you CAN do to help
If you would like to support your narcoleptic friend or family member, try to simplify things.
Avoid packed schedules
Do not make too many plans in one day. Having too many things scheduled can cause confusion and more drowsiness.
Give us a minute
Try not to rush them and give them a little extra time in case they “need a minute.” Sometimes closing our eyes for 15 minutes can make a noticeably big difference in the remainder of our day.
If I have too many places to shop in town and cannot avoid it, I will plan to close my eyes in my vehicle. I will park in the shade or between 2 tall vehicles so not many people see me, and I will sleep until my phone alarm goes off. I used to feel embarrassed and was scared people would see me sleeping, but I just had to get over it. My safety comes first! If taking a micro nap helps me to stay alert and to be able to complete my tasks at hand, then I am going to do it!
Acknowledge our reality
Remember that invisible illnesses can be misjudged, and narcolepsy is one that is high on that list. Show your loved one that you understand and verbally tell this to them! Acknowledging us and what we go through goes a long way!
What are some other things people without narcolepsy can do to show support and care? Share in the comments below!
How would you describe your relationship with your doctor?