You Aren’t Lazy! You Have Narcolepsy!
I can fall asleep within minutes of laying down and struggle to stay motivated throughout my day. If you come to my house, it’s possible that you might find me sleeping. At times, I struggle to talk, read, cook, and care for my kids. I am limited in where I can work because I know I will fall asleep on the job at some point.
A lot of people think I am lazy and unmotivated. Honestly, part of me wishes this was true. Instead, I face another reality. I have narcolepsy with cataplexy. Overcoming laziness is doable. Curing an incurable disease, like narcolepsy is impossible.
Narcolepsy changed my life
My name is Keeley. I am a 37-year-old mom of 4. For the first 30 years of my life, I was full of energy, ideas, and in nonstop motion. In 2012, right after my 30th birthday, I got a virus. I started sleeping that fall, and have never been the same since. It took until 2015 to get a diagnosis.
As narcolepsy took over my life, I changed. I stopped having friends over for meals. Heck, I stopped being able to cook. I started burning eggs, after years of being able to cook for 40 friends. I struggled to find words and my ability to organize thoughts became a challenge
I let the housework go and couldn’t remember things. I was scared and to make matters worse, I started hearing people say that I was lazy and unmotivated. I started to wonder if people were right. Was I just lazy?
My sister sees my reality
My sister often comes to my defense when people accuse me of being lazy.
Keesha is 16 months older than me. We grew up barely tolerating each other like sisters often do. Becoming adults, gave us the skills and distance to learn to become best friends.
I recently was telling Keesha about my narcoleptic friends who get accused of being lazy. She got a bit riled up as she exclaimed, “You all aren’t lazy, you have narcolepsy!”
Knowing me "before" and "after"
Keesha watched me fall apart in 2012 after I got narcolepsy. Me, getting it at 30 gave her a very clear “before and after.” She says,
I can see how easy it is to judge narcoleptics. From the outside, I see you sleeping, A LOT! But I also can see the pain you feel from missing out the life that passes while you sleep. I see the frustration of not being able to stay awake for important events. I see you struggling to communicate and forgetting important things. I feel the loss of the sister I once had. It makes me thankful you have the support system of our family, I mourn for those who don’t have that.
I know I am lucky to have a sister, as well as parents, a husband, kids, and friends, who saw me “before narcolepsy, and after narcolepsy.” I recognize that not everyone has that. I can’t force people to see you a certain way. But without knowing you personally, I have a hunch that you are strong. You probably wish people knew that you aren’t lazy, you just have narcolepsy.
Do you feel that your doctor understands narcolepsy?