Narcolepsy From a Different Perspective

As a narcolepsy patient, I struggle with my condition every day. It’s a fact I can’t change, and one I still struggle to accept.

As patients, the obstacles we face are never-ending, and we are well aware of that.

And as people, facing the daily battle of living with an invisible illness, no one better than us can attest to the feeling of being misunderstood and having our symptoms belittled.

For this very reason, I feel sometimes it is necessary to step out of our own shoes and into another's because although we have our struggles, it does not negate the struggles of others.

If I could step into my sister's shoes, this is what I imagine she would say:

My name is Ana, and I do not have narcolepsy

So why do I write to you, you ask? Because although I do not have narcolepsy, I too am affected by it.

My little sister was diagnosed with narcolepsy much later on in life. By then, like me, she had already moved out of our parent’s house and was living entirely on her own.

Before my sister's narcolepsy diagnosis

As a child, she seemed like a perfectly “normal” (although I’ve come to detest the word) child. She played well with others, had horrible tantrums like every kid, and overall showed absolutely no signs of behaving any other way than what was expected.

As she entered her teenage years, there was a significant and slightly abrupt change. But my parents and I concluded, as I’m sure most would, that her attitude and behaviour were due to hormonal change.

Basically, she was becoming a teenager.

Assuming this was teenage behaviour

As she grew up, we all assumed she was simply “lazy” but again...teenagers right? She slept late into the day, overslept almost every day, and practically had to be dragged out of bed on school nights.

But mostly, I cannot think of a single moment where I thought to myself, There must be something medically wrong with her.

After my sister's narcolepsy diagnosis

The day my sister was diagnosed, the guilt that settled in my stomach remains to this day. Guilt for not knowing. Guilt for not seeing.

As an older sister, you may not always show it, but you do everything in your power to protect your little sister. That’s a job that is imposed onto you without your permission, but eventually, it becomes less of an imposition and morphs into devotion.

Every factor that your parents couldn’t possibly answer to, siblings take upon themselves to remedy.

None of us were prepared for her new reality

Following the diagnosis, I think we were as ignorant of the implications it would have on her life as she was. Although I had my reservations in regard to the medication prescribed to her, all in all, we worked to adjust to her new reality.

But how can you possibly relate to something you have never felt? How can you tell someone it’s going to be OK when even the medical world can't?

How can you be someone’s support and shoulder to lean on when no one around you (including the patient herself) has much knowledge of the depth to which this condition affects absolutely every functioning organ inside her body?

How could we know it would affect every decision she makes or the internal battle she faces on a daily basis?

Narcolepsy affects us all

I do not wish to cast myself as a victim or ask any pity of you; I simply write because I am human, and narcolepsy has changed our family’s life.

We all try to be strong for her and provide support whenever she needs it. But there are days when helplessness, frustration, and utter desperation overwhelm me, too.

Because only someone who lives with someone who suffers from a condition like this knows the guilt, blame, and sheer powerless feelings that we are forced to stow away inside us every single day.