No Longer Alone
“So you just randomly fall asleep?” I would cringe whenever I heard this after telling someone I had narcolepsy. Thanks to horrible misrepresentation of narcolepsy in the media, when many people hear “narcolepsy” they have this image in their head that is far from my reality. In their minds, someone with narcolepsy will just fall asleep in the middle of whatever they are doing at any given moment. In their minds it is the opposite of insomnia.
I was never ashamed of saying “I have narcolepsy.” However, having to constantly explain it and correct person after person including friends, family and even strangers began to wear on me. What began as annoyance began to morph into anger and sorrow. It began to exhaust me. Explaining multiple times a day that narcolepsy was not what they thought. I would explain that I didn’t just “randomly fall asleep.” Instead, I would explain that it was a serious neurological disorder that affects my body’s ability to regulate the sleep wake cycles. If I wasn’t exhausted enough from my condition this added to the exhaustion. I quickly went from being a social butterfly to very reserved and more of a homebody than I had ever been in my life. I just did not have the energy to explain it anymore. I felt very alone and very misunderstood; even my closest friends did not understand this, although they did try.
To help myself cope, I began looking for a local support group. However, the thing with having a rare disease that is drastically underdiagnosed is that is not always an option. The one local narcolepsy support group I found was no longer active and had not met in over six months. During one of my many nights that I struggled with being able to sleep or stay asleep I ended up stumbling on a website for a nonprofit group specifically for narcolepsy. On their homepage they had information about their online support groups. Despite knowing how many resources there are online for every topic under the sun, it had somehow never crossed my mind to look online. I signed up for the following week’s meeting. I was nervous and excited all at the same time. I would actually get to talk to people that had the same condition as me and would understand what I was dealing with.
Finally, on the day I signed into my first online support group, I was expecting a small group of others like me with narcolepsy. While some of the ones on the call did have narcolepsy it was such a range of people on the call. There were recently diagnosed people like me, some that had been diagnosed many years ago and even caregivers. It was nothing like what I expected; everyone was welcoming, encouraging and had a lot of great advice. This very quickly became a part of my weekly routine. Each week our discussion was a little different; we would have different people that would participate from time to time. We had a few that were going through the diagnosis process, family and friends of those on the call, and even a few medical and nursing students. For the first time I did not feel alone; I felt like there were people who understood me. There were people I could talk about Narcolepsy and what I was dealing with, and I did not have to explain myself because they had been there before too. This group opened my eyes to the tremendous support that is available online not only through online support groups and chat rooms, but also through social media channels and blogs. We sometimes take technology for granted, as these were things earlier generations did not have. But this technology gives all of us the ability to find our tribe that understands and supports us through diagnoses like narcolepsy and many other conditions. Although I may not know any of these individuals personally they are the ones that finally made me see that I am never alone in this journey.
Lindsey Kizer was born and raised in Charlotte, N.C. and now resides in a small town on the outskirts of the city. Although she struggled with sleepiness and many of the same symptoms for many years, she was just diagnosed over a year ago. She enjoys traveling, cooking, and spending time with her loved ones and rescue pup in her free time. Although she has had to make lifestyle adjustments due to her diagnosis, she is determined to not let her condition stop her from doing things she enjoys.