My Narcolepsy Does Not Make Me A Burden

I not long ago read a journal article discussing the “challenges” of parenting a child with narcolepsy.

At first, I could hardly believe what I was reading. Here were doctors, researchers, and parents – all able-bodied – discussing the ways that their disabled child’s symptoms impacted them.

At first, I felt ashamed. And then I felt angry. Where are the journal articles on studies about the various, unending ways that narcolepsy impacts our lives? To live with narcolepsy, I think, is to suffer. Not only physically, but mentally and socially.

Narcolepsy makes so many things harder

We face many challenges due to our condition. People with narcolepsy are at higher risk of depression, for many reasons.¹ It can be difficult as a person with narcolepsy to maintain personal relationships. Dating is harder. Making and maintaining friendships is harder. Work and school is much harder for me now that I have narcolepsy. There is no part of my life that has been left untouched by the destructive fingers of narcolepsy.

I already often have to combat feeling like a burden. When I slip up, and judge myself harshly over aspects of myself that I cannot control, I remind myself: I AM TRYING MY BEST.

Accommodations are a natural part of life. Doorways, for example, are built to accommodate a human-sized person. We don’t give a human a cat-door and expect them to fit through it.

Society is not built with us in mind, though. So we have to advocate for ourselves. And navigating life as a person with narcolepsy is difficult and uncomfortable, just like squeezing through a cat-door would be. The way society is built is a burden on those of us that live with narcolepsy.

What I have to remind myself

Ultimately, believing that I am a burden holds me back in various ways. I am less likely to seek out the help that I need. I am less likely to let people support me in ways that I need. And I feel unworthy of the support that I am given.

Having needs does not make me a burden. Requesting accommodations does not make me a burden. Accepting help that is freely given does not make me a burden.

Positive affirmations

Some positive affirmations that help when I am feeling like a burden include:

“I am worthy of love and care.”

“I am not my narcolepsy.”

“I accept my symptoms as a part of me.”

“I can only control what is within my control.”

“It is not my responsibility to be small or needless.”

We don’t have to justify our needs

Ultimately, living with narcolepsy is not for the faint of heart. It comes along with a myriad of struggles that many able-bodied people cannot relate to. Just because others don’t understand the extent of the effects this disease has on us, doesn’t mean we have to explain it to them. We don’t have to justify our needs. Not to ourselves or anyone else.

We can be confident, knowing that we have won just by getting out of bed that day.