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Living an Authentic Life With a Rare Disease

Last updated: November 2023

I was diagnosed with narcolepsy halfway through my college career. My disease onset had been quick. Just a few weeks after getting a bad flu, I started exhibiting narcolepsy symptoms. Friends, professors, supervisors, and even family members all had issues trying to understand how I could change so much in such a small span of time.

I tried for a few years to keep up. But slowly, people and opportunities fell away.

It felt like my world was crumbling around me, because it was.

Learning to let people in

It has taken me years to find people who are willing and able to understand my rare disease. I am still learning how to let people in after being rejected for so long over a condition that I have no control over.

There are a few ways I’ve been able to connect authentically with other people. First, was through narcolepsy support groups. I started attending Wake Up Narcolepsy's support groups for people with narcolepsy a few years ago, and it changed my life. I suddenly had a room full of people who understood my symptoms and the struggles that came with them because they were living with them too!

My narcolepsy community has stepped in and served as my family for years now. I am so thankful for their support!

Giving back to my community

For me, living authentically also means finding ways to give back to my community. Not only have I been able to participate in these support groups, but I also have had the pleasure of giving back to them.

I am currently serving as a volunteer peer support group facilitator for Wake Up Narcolepsy’s LGBTQIA+ Narcolepsy Support Group. Every week, I get to hear stories from people like me, trying to live in a world that wasn’t designed with us in mind. It is empowering to watch these people learn and grow over time as they receive emotional support from others.

It reminds me of how far I’ve come from being that scared, lonely, closeted person with narcolepsy who felt like the entire world was against them. As it so happens – we are much stronger together.

Friends who can relate to my struggles

When I have friends who can empathize with my struggles, I feel seen. This helps me feel safe enough to ask for my needs to be met. Sometimes my needs are communal needs. Thus, sometimes when I advocate for myself I am also advocating for others like me. For example, when I am feeling a narcolepsy sleep attack coming on, and I ask a chronically ill friend if I can lay down and take a nap, they usually get excited because they are feeling unwell and need a nap too!

Associating with people who can relate to my struggles is helpful because they tend to be more respectful of my requests and behaviors than others who cannot relate.

Living authentically with a rare disease

Overall, “fake it until you make it” was not a successful strategy for me when trying to live with my rare disease. Authentic living is notorious for breaking down mental barriers. It can seem so scary at first! But the moment I found community – I realized I was home.

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