No, You’re NOT Tired Like Me!

As a person with narcolepsy, I am always tired to a certain degree. When people ask me how I am, a common response I have for them is, "I’m good, just tired! Like always!" And it’s the truth.

Sometimes people take this as an invitation to say that they can relate to me, responding that they get it because they are tired, too. These types of interactions leave me with a sour taste in my mouth. Because, no, they aren’t tired – not like me!

There is no 'fixing' narcolepsy exhaustion

People with narcolepsy experience uncontrollable tiredness that can result in hallucinations, sleep attacks, and even more severe issues like cataplexy. The reality is that most people without narcolepsy have not experienced the level of tired that I experience on a daily basis.

Sure, people without narcolepsy can be tired or experience fatigue. This is especially common in our increasingly fast-paced society. Many of us don’t get enough sleep. The difference between people with narcolepsy and people without is that people without narcolepsy can take a few days to catch up on sleep and eventually feel normal and healthy again. For those of us with narcolepsy, our exhaustion is chronic and ongoing. It involves our brain’s inability to control our sleep-wake cycles. Therefore, narcolepsy is severe not only in its symptoms but also in its persistence.

Unlike them, there is no "fixing" our exhaustion.

Facing invalidation from others

Worse, even, is that sometimes when I say, "I’m good, just tired!" people will respond with grumbling comments such as, "Well, I got up at 6 AM today, and you got to sleep in!" Even when they know I have narcolepsy.

It feels so invalidating when I hear things like this from the people in my life that should be the most supportive.

I am not alone in this, though. I know that. Many of my friends with narcolepsy have reported similar statements from the people around them. So why do some people around us feel the need to compare their levels of tired to ours? Or even suggest that they have more reason to be tired? They are able-bodied and able to do more than us. Regardless of why people are saying these things to us, it is downright insulting to hear.

Keep supportive people close

I still have a lot of shame surrounding my narcolepsy symptoms. Eliminating people from my life who are not supportive surrounding my disability is painful... However, it is less painful than continuing to hate myself for my disability.

I have had to do a lot of personal thought-work surrounding my disability. It has taken me years of therapy and personal work to get to a place of acceptance when it comes to my narcolepsy symptoms. It is helpful to keep people in my inner circle who are validating and understanding when it comes to my condition. Anything less, and my mental health suffers. I am healthier overall when I am shameless surrounding my narcolepsy needs. It makes it easier to take care of myself, too.

How do you respond to comments such as these? Please share in the comments. I’d love to find new ways of navigating these situations!