Exploring New Hobbies with Narcolepsy: Sewing and Support Groups
I was diagnosed with narcolepsy type 1 in 2017. That means that I’ve had less than 4 years to acclimate to my new condition. Many of the hobbies that I enjoyed before narcolepsy became difficult or impossible for me to engage in during this time. I am slowly finding hobbies that I can participate in with my condition.
My value is not defined by a career
I graduated with a master’s degree in biology but have not been able to pursue further education or a research career due to the severity of my symptoms. Most days, taking care of my body and my service dog is too much for my current capabilities.
However, I find it important to invest my time in activities that I used to enjoy outside of the academic and research world. It reminds me that my life has innate value that has nothing to do with my career.
How I incoporate hobbies into my life
Some of these activities are easier to participate in with narcolepsy symptoms than others, that’s for sure. I find that taking breaks between “hobby days” helps me catch up on my other responsibilities. By doing so, I prevent burnout that might occur.
I am also an artist, so it is important that I do not overwork myself to the point that I am unable to be creative. With narcolepsy, that is quite easy to do, so I have to be careful.
I was taught to sew in high school by a seamstress. My sewing machine broke in college and I haven’t done machine-sewing since. That means I haven’t experienced sewing on a machine with narcolepsy. However, I occasionally hand-stitch clothing repairs. Hand-stitching with narcolepsy can be difficult for me the longer I participate.
As time passes, brain fog creeps in and I begin to drift into automatic behaviors. My stitches become looser and sloppier, and I might prick myself a few more times than normal. When this happens, I am reminded that people with narcolepsy report a higher number of workplace accidents.1
Overall, sewing is doable for me with narcolepsy, but it is more complicated than it was before. I couldn’t imagine actually machine-sewing clothing from patterns with narcolepsy brain fog! I hope it isn’t too hard, as I plan to take up machine-sewing again in the future.
I have found that support groups are becoming integral to the state of my mental health. Participating in support groups leaves me with a sense of community and interpersonal connection. Before I began participating in support groups, I felt lost and just “wrong.” In time they have changed my life for the better.
My condition limits my participation in a few ways. Firstly, I normally need to leave meetings early due to sleep attacks. Brain fog can also cloud my brain in ways that I cannot control due to my narcolepsy, resulting in a reduced ability to appropriately communicate. However, the accessible nature of the online meetings helps me be able to enjoy something that I otherwise wouldn’t be able to.
What kind of hobbies are you able to participate in with your narcolepsy? Let us know in the comments!
This article is part of an author series on hobbies. Check out the other articles in this series:
How has narcolepsy impacted your ability to work?