I’m Afro-Latina, And Living With Type 2 Narcolepsy, Has Taught Me To Bring Visibility to Sleep Disorders In My Community – Jenay Wright

A young, 26 years older morenita, born in a city that never sleeps. But she can never stay awake either. How does that even make sense? Falling asleep on the A train, sleeping through panhandlers, the candy man, and the Mexican mariachi band. Somehow she never missed her stop. Her eyes almost look so drowsy enough to think she drinks tequila for breakfast. Dozing off between 168th street to 145th in less than 5 mins. I could never understand why I was so tired, no matter how many hours I slept and naps I took it just wasn’t enough for me to feel energized. I can laugh myself to sleep right now ( yeah I make jokes to keep me grounded ). I can’t even remember the last time I felt awake.

There’s not enough Red Bull and Cafe Bustelo that can save me. I started experiencing daytime sleepiness in December 2021 and it went on and I just couldn’t accept it. I mean I was the amiga you can call at 1:00 am to get dressed and come out to Dyckman or the heights and be great. I was the social butterfly and the down for anything friend. Pero, now I can’t even attach the word social to anything because I’m so physically drained. I don’t want to do anything but sleep. I love to sleep, it’s my superpower. I wanted to truly turn a negative into a positive and use my voice to amplify stories of people facing chronic illnesses.

There are so many narratives and underlying diseases that the world should be more attentive and conscious of. There is also a lack of resources provided in communities that I come from and access to the best medical care. In my own experience, I have truly felt neglected at hospitals because of my skin color and have watched other individuals be taken care of while I sat there suffering, not truly understanding why I wasn’t deserving of the same medical attention. To truly not know what is going on with you for so many months, can often become a lonely space and if you don’t eventually realize there is always a light under the tunnel it can almost feel like the end. I self-isolated myself and battled with my sadness versus watching everyone else’s happiness around me.

Staring out my window on Broadway wondering why I had no energy to walk down the stairs and go grocery shopping. I went weeks without going food shopping and ordered in because I felt embarrassed about falling asleep walking in the supermarket. I feared getting on the subway because I sat with the thoughts of me dozing off and someone robbing or sexually hurting me. I live in one of the most beautiful and biggest cities that existed but I almost didn’t have anyone who went through having a sleep disorder, but I know that the only way to get through this battle is to turn it into a breakthrough. The way to get there is acceptance and not hide what I truly feel. Understanding it’s okay to not be okay and even though as a Black woman strength is already instilled to my flesh and my resilience is there because of all that I endured. It became life lessons and being strong is not just a physical attribute it can be mentally and that is who I encompassed.

After months of my daytime sleepiness, I went and got a sleep study which was VERY hard. I for one had to stay overnight and sleep in pitch black which I did not like since I was a kid. Sleeping in the dark by myself just for some reason always felt like the biggest challenge. I felt unsafe and unless I had someone in the room I always kept the television on. But I knew eventually I had to learn how to do this and I did and completed my sleep study. Every hour and a half I had to take a 30-minute nap and keep myself up which was a journey I tell you.

I am proud I got through it because it introduced me to my most recent diagnosis, type 2 narcolespy and idiopathic hypersomnia which is a chronic neurologic disorder that causes one to be excessively sleepy during the day, regardless of how much sleep you get the night before. This can hit any time of the day, especially during the daytime. What is most scary is that it can hit at any point which makes it extremely scary. But beginning medication to help me get through the day and get back to my normal routine has been slowly progressing. Even though I do tons of self isolation and really want to be to myself I am embracing the new me and trying my best to do the right thing by informing instead of distancing myself from the world.

This is to my point earlier and as to why this matter is so serious. And I will do everything in my power to bring light to those who felt their story wasn’t heard and went through pain and suffering alone. There are so many people going through silent battles and don’t want to talk about it because they think no one understands.It’s something that was instilled in us to keep what we go through under the rug. It doesn’t make you weak at all and keeping this mindset just know you are going to get through this and you are going to come back stronger and that’s on Mary had a little lamb. Type 2 Narcolepsy is a part of my story and it doesn’t pull away from my strength and or resilience. I am more than the myths and stereotypes individuals have about people with narcolepsy.I am not lazy or unmotivated. I am just always tired and drowsy. That is just how it is.

And I am unapologetically wearing my diagnosis proudly. And that’s on punto. Now let me go make my bed, cause this mamita is tired.

For more information on narcolepsy and idiopathic hypersomnia, check out the below sites.

About Idiopathic Hypersomnia

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet

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