Duality of Life with Narcolepsy
It can be moments where I am out with friends having an amazing time, full of energy, being present in the moment and then a sudden change occurs and sleepiness overcomes my brain and body. I then try to fight the symptoms of sleepiness along with the feelings of sadness and frustration because I go from feeling so energized and present, to struggling to keep a conversation going and acting as if I didn’t have this abrupt change in wakefulness to keep the convo normal. One moment I am the busy bee I love being and running errands and working out, making plans and the next moment I have to take a nap because I feel too sleepy to do simple tasks. These moments can make me feel like i'm living two lives: sleepy, and tired or wake full and energized. Sometimes I don’t want others to see the parts when narcolepsy makes little and big moments difficult. I want them to see me as my busy, active, social self, and hide the part that will always struggle with sleepiness.
It can be easy to forget the little things I do that help manage my narcolepsy when my symptoms are mild. The mental toll of narcolepsy can often be more than the physical symptoms in my own experience but recent studies on narcolepsy also show that. The sleepy side and the “normal” wakeful side of myself are at tug o war and despite efforts the sleepiness side wins if I don’t take the nap. On lazy days or days off of work I can take those breaks to nap and rest when the sleepiness hits me. However, for dinners with friends and family, interviewing for a job, going on dates, or working there is not always the time or space to give in to the sleepiness.
Research in the article Health related quality of life in narcolepsy, showed that that narcolepsy often impacts people’s mental health more than the physical health in terms of quality of life. Maybe it can be correlated to most people with narcolepsy going years with having symptoms before they are diagnosed and commonly felt dismissed in the process of getting diagnosed. Perhaps it also has to do with knowing something like this will always affect you and trying to present as the person you wish you could feel like all the time is easier around other people. I am pretty open with how narcolepsy affects me, but more than I like to admit it, I find myself trying to fight and hide when I am sleepy and mentally down from narcolepsy whenI am out with friends and family.
Reminder to me and others that it’s okay for others to see you when your symptoms are making enjoying the moment and doing simple tasks difficult. I think it’s normal to want to always have your best, asymptomatic, and wakeful self turned on whether you have narcolepsy or another chronic illness symptoms. But what's even more normal (important) is accepting where you are at and feeling while having those in your support system know when narcolepsy is affecting you. Living with a chronic illness emphasizes the duality of life from feeling “normal” and healthy to illness flare ups and sleepy episodes, but for me has made me appreciate the ‘healthy’ and wakeful moments even more when I can be present in moment.
