Maybe the most important lesson I have learned about feeling better is just loving myself with narcolepsy. I’m not going to lie and say it’s easy. But I do think this is especially important for people with a chronic illness.
I have ups and downs and I’m constantly working to try to do it more consistently. It’s easy to get into negative patterns and tear ourselves down. It takes a lot of practice to reverse that so that we are consistently giving ourselves positive messages.
As a person with narcolepsy, I have had years where I let the diagnosis consume my life. Maybe you can relate. Some of those years I hardly remember what I did or how I even managed to get by.
Struggling with Narcolepsy
I have struggled with depression, self-harm, and suicide attempts. I think these are fairly common among people with narcolepsy. It can be a very isolating illness if you don’t have the community and support that you need.
First of all, the process of getting diagnosed was not an easy one. It’s difficult to live with an undiagnosed illness and have no treatment options for the exhaustion and other symptoms. Negative emotions definitely didn’t improve my narcolepsy symptoms and trying to justify to others how tired I really felt was a repetitive and exhausting task. I didn’t even like myself, loving myself with narcolepsy seemed impossible.
After my diagnosis, years of trying out different medications and trying to find something that worked followed. For me those years were my teens, where there were so many other things going on, and I was not equipped to deal with what I was going through. When it came to explaining my exhaustion, I always resorted to, “I have narcolepsy.” It became a part of my teenage identity, and I used it to protect me from having to try new things or go out of my comfort zone.
Accepting the Past
I didn’t make the best decisions when I was younger. It makes sense to me now since I couldn’t comprehend actually loving myself with narcolepsy, I didn’t treat myself well. I treated my friends and family much better than I did myself. It felt impossible to believe I deserved good things because I had internalized a lot of negative beliefs about myself.
While I can’t change the past, I am learning to go back and forgive that teenager for making such poor decisions. After all, I was doing the best I knew how. And by forgiving myself I am breaking the cycle where I return to beating myself up and thinking of all the things I can’t do. I keep reassuring myself that I really can do anything! Including starting this blog.
Enjoying the moment
This weekend as I walked through the countryside north of Yangon, I was admiring every plant and
landform that I saw in front of me. I was hesitant to take my phone out and snap pictures because I wanted to just enjoy the moment and relish it.
I captured so many images just in my mind that I wasn’t willing to photograph. Some of them would have been impossible to capture anyway. As we passed by a monastery, we could hear the voices of young girls singing in the local language. We couldn’t see them but the song carried across the plains and I let myself get lost in their melody as we walked.
We passed by tiny villages that reminded me how simple life can be. Many of them had simple bamboo houses and a few animals wandering around. They had bicycles or motorbikes to get around. Every single person I encountered smiled at me and many laughed at my attempt to say hello in the local language.
We waved to each other, and smiled broadly with genuine joy at having encountered each other. It was an amazing experience that I don’t think could ever be repeated in my home country. I am so grateful for everything that I encountered along the way. At the end of the day I reminded myself to be thankful for my body, and move a little bit closer toward loving myself with narcolepsy and accepting it.
What to do next
If you are interested in learning more about how to love yourself and enjoy your life more, sign up for my email list with the form below. You can also read more about how to treat narcolepsy and Giving Yourself Permission to Rest.
2 thoughts on “Loving Myself with Narcolepsy”
I met one guy who went to Bagan. He said …. it felt so good to lead a simple life there. Just cycle around and enjoy the views.
Bagan is beautiful! I have been there twice already and would love to go back. If you are ever in Myanmar, you can’t miss it!