Does Narcolepsy Make Me Unreliable?

As someone living with narcolepsy, I have often wondered if my condition makes me an unreliable person.

Narcolepsy is incredibly unpredictable

Narcolepsy is an incredibly unpredictable condition, so it seems only logical to me that it has a good chance of generating behaviors and decisions that fall into the same category.

In the last few years, I’ve come to learn so much about this condition. Its ability to surprise me never fails to astound me. It’s as though just when I thought I had it figured out, the rug is pulled from under my feet, and I’m humbled again. I believe that narcolepsy is unique to everyone and for some, it may not be as erratic as it is for others.

Plans can fall apart

Growing up, I always believed in the importance of keeping your word, always arriving on time, and never breaking a promise. This year, I was forced to face a long overdue reality: I no longer was the person I used to be, and it was time to stop kidding myself.

This realization came to me with my niece’s performance at school. I had told her that I would attend, but when the day came, my narcolepsy symptoms were seriously out of control. As much as I wanted to, I could not leave the bed. My head was swimming, and I hardly knew what day it even was. You feel as though you have actually been drugged. That’s how disorientating it is.

Understandably, my niece was crushed. Though she tried her best to be understanding, I know that deep down she was really disappointed. It might have been okay if this had been the first or second time I had cancelled on her, but unfortunately, it wasn’t even close.

Others don't always understand

What truly made the situation even worse was that her parents were, of course, upset on their daughter’s behalf and suggested I don't make promises I can't keep. Although I understand where they were coming from, it was, nevertheless, hurtful to hear. It felt as though they were insinuating that it was a choice.

Some people seem to think that if we simply "decide" to make more of an “effort” with narcolepsy, then we could do everything they could. I think this is absolutely unfair and untrue. 

These kinds of things are the ones that make those of us with narcolepsy feel as though we are highly misunderstood and that our condition is greatly trivialized.

Managing people’s expectations

That is not to say that all people with narcolepsy are unreliable at all. This is simply a question that I have been asking myself for a long time: does my narcolepsy make me unreliable, or is it just me?

It’s hard to know where narcolepsy ends and I begin sometimes.

So, for the sake of maintaining a healthy relationship with my niece, I have now adopted a new method to deal with this issue. I have learned that it is extremely important to manage people’s expectations. This means no promises.

After the debacle with the performance, I decided to sit down with my niece and have a serious conversation with her about what happened and why I missed her show.

Being honest with yourself and others

I believe that it’s important to be honest with yourself and others about your limitations and abilities. It may be helpful to communicate with coworkers, friends, and family members about your condition and how it may affect your reliability. It is also important to set realistic goals and prioritize tasks. By breaking down larger projects into smaller, more manageable tasks, you can reduce the likelihood of feeling overwhelmed and increase the chances of completing tasks on time.

In conclusion, I hope that it is just me and that no one ever has to experience the disappointment I saw in my niece’s eyes that day.