Narcolepsy is a highly misunderstood condition, and it can also be very isolating. Living with the daily effects of narcolepsy can be challenging enough, but you might not think about how it can take a toll on your mental and emotional well-being.
Doctors may see narcolepsy symptoms as mimicking depression or anxiety in the beginning of the diagnostic path. Sadly, the right diagnosis may never be made and the path stops there. I once heard someone else use the phrase, “I’m not tired because I’m depressed, I’m depressed because I’m tired,” and that has been my go-to phrase when sharing my experience about this as well.
I thought that once I had a diagnosis it would put an end to all the discouraging thoughts I was having. I hoped that once I got treatment, I would feel normal again. Little did I know at the time that it would take a while to find a treatment that worked for me. The self-degradation continued as I went through my days feeling angry. I was disappointed that no matter how hard I tried I still didn’t feel like I was good enough.
We really do have good intentions. We’re not lazy, as society makes us seem, and we don’t just fall over into a deep sleep like the media portrays. We do set goals and work hard for them, but we’re left feeling like a disappointment to ourselves when we don’t have the energy to accomplish them. This is an endless and vicious cycle.
I know I shouldn’t compare my accomplishments to the progress of others, but it’s easy to feel anxious about small things. There are still days where I find myself chugging four coffees before a work meeting until my heart is about to explode, just to seem like I’m maintaining an average level of functioning.
It can be hard for people to understand how their words impact us too. Since they think narcolepsy isn’t “that bad,” it makes it that much easier for people to downplay the condition, and sadly on purpose sometimes. It’s not always the comments about being sleepy or not looking sick enough, but it’s the intentional bashing of our lifestyle. I’ve let people walk all over me when I didn’t have the energy to fight back. But when I finally stood up for myself, I was the inconsiderate one.
Friends will stress checking up on their peers, but then turn their backs even when you do start to show it on the surface. When this happens, it makes us wish we never said anything in the first place. It makes us hesitant to open up, keeping our feelings bottled up, and leaving us feeling alone.
We may become withdrawn in friend groups because we’re told we can’t take a joke and are always too sensitive. We don’t want to stop being invited to things with the people who understand and support us, even if we don’t have the energy to make it.
The people meant to have a positive role in your life will get that. I’ve learned to shift my mindset and realize that people who don’t treat you with the respect you deserve aren’t allowed to drain you of the limited energy you have.
I’m never going to feel happy if I keep caring so much about other people’s opinions. Sometimes, the biggest battle is the one I have with myself. It’s also the one that I have the most power to change. I try to set reasonable expectations of myself and don’t get upset when I know that I at least tried. It all takes time but try to celebrate small victories whenever you can.
I want other people to understand how certain things make us feel; awareness is important, and the way others respond can impact how we feel as well. I’m also much happier when I focus on the challenges that give my life meaning. With inspiration from author Mark Manson, in one of his most popular books, I’m learning to address the things that I can control. In doing so, I can maximize the most productive use of my time and energy on the things that matter most.
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