REM Runner’s Note: “What does the NARCOLEPSY: NOT ALONE campaign mean to you?” I’m inviting participants to write guest posts about their campaign experience. Thank you, Racheal for sharing your story!
Guest Post by Racheal LeBrun:
For me, at age 29, narcolepsy has been a very tough journey of struggling to live my life during the so called best years of my life. Knowing I’m not alone in this battle is something words cannot explain and that is why it was important to participate in the NARCOLEPSY: NOT ALONE campaign.
I work at a dental office, and asked my co workers if they would join me in my photo for narcolepsy awareness, and of course they were excited! I thought why not show me napping because that is a daily routine for me on our lunch break. We took the photo in front of the office fire place, I unfortunately don’t get to nap there but I do get to in the server room where it is dark and cool.
My co-workers are an amazing group of people. I had my first cataplexy attack during our Christmas party last year and I didn’t experience judgement of any kind, they listened and offered support instead. None of us knew at that time what was wrong but once I got diagnosed, everyone was understanding.
The photo-taking sparked a few conversations with my co-workers about narcolepsy, with one co-worker asking how common it is. I explaining that narcolepsy affects 1 in every 2000 people. My co-worker was surprised.
I can understand how narcolepsy awareness is lacking, at times I’m embarrassed to admit to my patients I suffer with it. I don’t want them to question my ability or worry I’m going to fall asleep during their dental procedure due to the misunderstanding of narcolepsy symptoms and how symptoms are different for everyone. I am slowly becoming more open to discussing this with my patients when an opportunity arises. I think the NARCOLEPSY: NOT ALONE campaign is great way to bring awareness that everyday people are coping with narcolepsy.
Thank you Julie for all you do to raise awareness and provide support.