Narcolepsy and Feeling Chronically Alone

Living with a chronic illness is hard. Living with an invisible chronic illness like narcolepsy is hard and extremely lonely.

As a narcolepsy advocate and support group host, I have had the privilege of hearing many people’s stories and experiences. One thing I’ve learned from this is that no matter what your journey has been, narcolepsy can make us feel truly chronically alone.

Around others, I can't pretend to feel normal

It’s funny and may sound cliche, but I’ve realised that I feel the loneliest when I’m around people. It’s as though being alone in my room creates a false sense of reality. It leads me to imagine that I’m not actually that different from everyone else.

When I’m surrounded by people, I can’t pretend to feel normal, because it’s not possible to ignore something that is evident. My attention span is limited. My energy is limited. My patience declines, and my cataplexy worsens.

The loneliness of narcolepsy is unique

As much as I consider myself to be a social person, I’ve realised lately that my perception of myself may need an update.

I understand that most people feel alone most of the time. We are all going through our own personal struggles, and I am aware that there are people in worse positions than mine. But my opinion has undeniably changed since I was diagnosed 5 years ago,

The loneliness you feel when living with an invisible illness like narcolepsy is unique for a variety of reasons.

It sometimes feels easier to isolate

Unlike emotional issues such as grief, heartbreak, etc., there are very few people in this world that can relate to narcolepsy. Even people with the same condition as me sometimes can’t relate, because narcolepsy is so different for all of us. Our lives are different, and we all have our own internal and external demands to contend with.

I also find that with these conditions, one of the most challenging realities is feeling alone because we isolate ourselves. It sometimes feels easier this way. It’s easier than having to be in a situation where you have to explain why you’re not interacting enough, or to hear the frequent "Are you tired?” question. It’s easier than having to pretend to put on a smile and carry on a conversation when all you want to do is lie down in bed and close your eyes.

Hoping for more good days than bad

How do you explain to someone that there are things that they find so simple that aren't so easy for us? Like washing the dishes or doing laundry. Simple tasks take up an enormous amount of energy for people with narcolepsy. It’s things like these that separate us from everyone else and cause us to feel chronically alone and misunderstood.

The strangest thing is that I don’t always feel aware of this, but sometimes it will hit me like a ton of bricks. I don’t know if this feeling will ever go away; that’s just a reality of narcolepsy.

All we can hope for is to have more good days than bad.