Lindsey kept her narcolepsy diagnosis to herself, family and close friends, until September 2019 when she decided to finally post about her health experiences on her social media profiles. Here she shares how opening up about her diagnosis has helped her accept the condition she is living with and become okay with being vulnerable.

Finally Telling My Story

I am living with narcolepsy.

Due to a lack of hypocretin (neurotransmitter in the brain that helps to regulate sleep/wake cycle) I deal with excessive daytime sleepiness, sleep paralysis, disrupted nighttime sleep, vivid dreams, hallucinations when falling asleep/waking up and cataplexy (sudden loss of muscle control due to strong emotion).

I posted about having narcolepsy [on social media] for the first time September 2019. The ups and downs of my condition were becoming more noticeable and it was absolutely terrifying. At the time [of my first few posts,] very few people outside my close family and friends knew. I was scared of how others would react [and] if it would affect my career or future careers. Despite how terrified I was, I wanted to be there for others [experiencing a similar situation]. I knew what it was like to feel alone. I also felt like without being open I wasn’t fully accepting my diagnosis yet.

For me, [posting my diagnosis] was a moment of acceptance. Accepting my diagnosis and that it didn’t define me but it was a part of who I was.

You Are Not Alone

It’s okay [to feel vulnerable]. We all feel vulnerable. You are not alone. There is a whole community that fights similar battles and is here to support you.

[My greatest source of courage] is seeing how much I have grown since opening up about my diagnosis and knowing they there are others out there looking for answers or support that are in similar situations that I was at one time.

Lindsey K.
Belmont, NC
Diagnosed with Narcolepsy, Fibromyalgia, High Cholesterol, RLS

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