Narcolepsy, Disability, and Identity: Have I Become My Diagnosis?

The longer I live with narcolepsy, the more I realize how I’ve had to adapt to life as a result of my symptoms. The list of things I have to do in order to function as a human with narcolepsy is never-ending.

The medications.

The endless napping.

Not to mention the fact that being tired all of the time is a burden that I wouldn’t wish on my worst enemy.

Yet, this is the daily reality for those of us that live with narcolepsy.

Identifying with narcolepsy

I have to say that the first time that I ever truly identified as a person with narcolepsy was during my first narcolepsy support group meeting. Before that meeting, I had constantly fought against identifying as a “narcoleptic,” or a “person with narcolepsy.”

I think a lot of this had to do with the fact that my narcolepsy symptoms didn’t start until my early twenties. So, for the first few years, I fought hard to “fix” my narcolepsy. That’s what everyone else around me wanted, too! We all just wanted the old “me” back. However, it soon became clear that she was gone forever. Or at least, her old life was.

Not me, though. I am still here. At the heart of it all, I am still “me.” But I am much more limited now. And for most people in my life at the time, this fact became insufferable.

Did I become my diagnosis?

“You can’t blame everything on your disability, you know,” stated one ex-friend of mine after they’d had too much to drink.

It was then that I realized how invisible my condition truly was. Because, surely, if this friend knew how hard I pushed myself on a daily basis, to do the most basic of tasks, let alone make the effort to spend time with friends – time and effort when I have none to spare. This effort that I expend for others means that something else in my life is suffering for it.

For example, I’ve had a lovely week spending time with my current partner. Yet my kitchen sink is full of dishes, and my fridge is empty.

Why?

Because there is always a cost to expending energy as a person with narcolepsy.

So why do I feel the need to hide my narcolepsy symptoms?

I have recently been coming to terms with the fact that I’ve noticed that I am constantly hiding my narcolepsy symptoms from those around me. I know it has much to do with all of the rejection and invalidation that I’ve faced since my narcolepsy symptoms started. However, through the narcolepsy community I have also had support and acceptance. Both things are true.

I hope to advocate for myself in a way that makes it feel safe to be me.

Living with narcolepsy is a constant balancing act between embracing who I am and managing the limitations that come with it. The world often doesn’t see the exhaustion behind my smiles or the sacrifices behind my presence, but I’m learning to accept that my worth is not defined by what others perceive—or by what I feel I must hide. My diagnosis may shape my days and nights, but it does not define who I am at the core.