Learning to Love Myself Again
Trigger warning: This article discusses emotional distress and mentions self-harm. If you or a loved one are experiencing suicidal thoughts, there are resources available for support including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat.
I often talk about how I got narcolepsy at 30 and was diagnosed at 32. This detail is important to me. Why?
Because I loved who I was and the life I lived before I got narcolepsy. After I got narcolepsy, I began to hate my life and myself.
We all have a unique narcolepsy story
I understand that this concept of knowing who I was before narcolepsy is different for those who have had narcolepsy for as long as you can remember. My hope is that regardless of how long you have had narcolepsy, you will find a way to connect and benefit as I share my story.
The first 30 years of my life were extraordinary. I had a great childhood. At 19, I met the most amazing man in the world. I had the privilege of becoming his wife at 21. We quickly started a family, and I gave birth to 4 incredible kids. We traveled extensively with our kids. Volunteering in orphanages, refugee camps, and doing work projects around the world was rewarding.
I have seen poverty beyond comprehension, injustice, war-torn countries, and looked into the eyes of people who have been broken by circumstances out of their control. It instilled in me a sense of deep gratitude because, as an American woman, I have more freedom, opportunity, rights, and laws protecting me than any of the women I met in the nations I visited.
Then everything changed
At 30, out of nowhere, my body started to do crazy things. I didn’t know what it was then, but we now know I had 25 to 35 drop-me-on-the-floor cataplexy attacks a day. My excessive daytime sleepiness (EDS) was so bad I struggled to take care of my kids.
I could barely leave my home, let alone travel anywhere else. I started hearing voices and hallucinating at night. I forgot everything. I started yelling at my kids and hubby. I gained 60 pounds. My marriage started to struggle.
Then sleep paralysis started. I became afraid to sleep, knowing that when I did, I was likely to encounter what felt like demons pinning me down and raping me. It almost broke me. I hated what was happening to me. I hated narcolepsy, and I began to hate myself.
I was an absolute mess.
I started hating myself
On top of it all, I remember hating myself even more because I still had it “so good” compared to the people I had seen around the world. Why couldn’t I just choose to be more grateful?
One night I found myself on my bathroom floor in so much emotional pain that I started looking for something sharp to press into my skin. Not to end my life, but to cut in hopes that I could release some of the pain that I was feeling. It was my rock bottom.
As I rummaged, the reality of what I was trying to do stopped me in my tracks. A voice in my head screamed, “This is NOT an answer. Get your s**t together!”
Resolving to get better
Something changed in me as I left the bathroom. My circumstances weren’t different. I still had narcolepsy, but I had found a resolve to get better, mentally and physically, or die trying.
I began listening to my close friend and fellow spoonie, Lorrie Gray. She is a life coach who teaches that we can choose what we think. There are things we can't control, like having narcolepsy, but we can decide what we think about that diagnosis and ourselves. And we can decide what we choose to focus on.
I appreciated Lorrie because she talked about how it was often hard WORK to change our thoughts. Such incredibly hard work. But it was possible.
Choosing new thoughts
Choosing to think differently didn’t mean I was ignoring my pain or invalidating my experience. It just meant I was choosing to focus on something else. And yes, it was hard.
Instead of thinking, “I hate who I am,” I picked a new thought. “I am worthy of love.” I noticed that as my thoughts changed, my emotions changed. I was less frustrated and angry, and gratefulness and joy started creeping into my life.
As my emotions changed, my behavior naturally changed too. I spoke more gently to my family. I started pursuing my dreams again.
Seeing the results
When my actions changed, so did my results. I was getting more done and moving forward with my goals. I was experiencing myself and my life differently. I began to love myself again. I began to appreciate my life, even though the only thing that had changed was my internal narrative.
Finding our positive outcomes
I often hear of people who consider narcolepsy their superpower. They have found a way to embrace it. I am so inspired by these people. I may have found a way to love myself again, but I can’t say that I have found a way to love narcolepsy...yet.
However, I have found a way to think about myself and my life with narcolepsy that is significantly more positive. This is leading to all kinds of positive outcomes for myself and those around me.
If you are interested in learning more about this process, check out my friend Lorrie on Instagram or Facebook @coachlorriegray
Lastly, if you are struggling with self-harm, please seek help. You are worth fighting for.
Do you feel that your doctor understands narcolepsy?