Patient Blogs | Sleep Disorders
Coming to Terms With a Narcolepsy Diagnosis
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When I heard the doctor say there is no cure for my narcolepsy, I was overcome by an odd combination of relief and shame. At 22 years old, I was going to have this condition for the rest of my life. I knew that I would have to make some adjustments. But looking ahead at my life, I didn’t know how I would come to terms with it or how I would be impacted in the future. I felt hopeless, especially when no medications worked for me at the time. It took me a while to be at peace with the situation, but I had to realize a few things first.

You will learn as you go. The thing about chronic illness is that it’s not all about positivity and inspirational quotes. There will be days where you doubt yourself, you’re negative, or you don’t have the energy to do the things you planned. I realized that a key part of this journey is making adjustments instead of focusing on overcoming obstacles. Things will be challenging, but they will get easier. I reevaluated what makes me happy, what is worth my energy, and my definition of success.

Self-acceptance is in your best interest. At first, I was shy about sharing my diagnosis, because I was afraid of being misunderstood or not taken seriously. I joined support groups that helped me feel accepted in a social setting but making the decision to accept myself was ultimately up to me. I started to see that I had formed opinions about myself based on what other people said, and that I got my validation from others instead of from myself. Let’s say your best friend called you up and said, “I just got diagnosed with narcolepsy and I’m feeling very overwhelmed.” Would you tell them that they should feel hopeless and might as well give up because they’ll never be able to accomplish anything? Or would you tell them that you support them and can’t wait to see the great things this journey teaches them? If my best friend doesn’t deserve to be put down, what purpose does talking to myself like that serve? That is not going to change the situation, and it doesn’t matter what anyone else thinks if they haven’t walked in your shoes.

Don’t ruin present or future moments with something you can’t change. I can’t spend my life comparing myself to others or dwelling on how things that may have been different without a diagnosis. This kind of thinking will just drain me even more. I want to say that narcolepsy isn’t going to stop me, but sometimes it does, and I’m okay with that. I am doing my best with what I have, and that is enough for me. I appreciate the things I can do, now that I have an accurate diagnosis and I’m getting treatment. I feel empowered when I can complete a task without needing to say, “I don’t have the strength to do this right now.” I’m using narcolepsy as my superpower and not my setback, and I’m discovering things about myself that I never would have known otherwise. One of the biggest things is realizing I can either mope around or be grateful that I can still do things I enjoy. I can also use my experiences to help and inspire others.

You will end up taking better care of yourself. Making the necessary adjustments can be challenging until you get more comfortable. It takes time, just like learning to ride a bike. Have patience and try not to get discouraged as you navigate this path. I’m always learning about myself and my limits of what I can and can’t handle. Instead of looking at it as a loss when I spend most of a day sleeping instead of being productive, I know that I’m serving my body by giving it the rest that it needs. I also don’t plan to set myself up for disappointments by setting unreasonable goals. I celebrate small victories. It’s a victory on days when I simply get out of bed. Sometimes I feel like I miss out on things because of the adjustments I have to make, but I know these changes are manageable and vital to my health. Narcolepsy taught me how to prioritize my health to ensure my success, and how to set boundaries and be confident in them.

Energy is precious. I learned to be mindful of how I feel about many things, like being around certain people. Do they build me up or drain me of what little energy I have? Do my surroundings provide an environment that I can thrive in, or does my space make me feel stressed? I cut everything out of my life that doesn’t serve me and try to only focus my energy on what’s important to me. Your diagnosis is not your fault. You don’t owe anyone an apology or explanation for being different, for needing that nap, or setting that boundary.

Your character speaks for itself. Despite living with narcolepsy, I still put my best efforts into what I do. I care about the goals that I work toward and communicate openly with others about my needs. Accommodations and support have helped me tremendously with this. It’s important to realize that narcolepsy doesn’t define your character or work ethic -- they speak for themselves. People will notice your attitude, and this is something you should be proud of. It is a lifelong journey. Looking back on how I felt after receiving my diagnosis, I know that it’s still teaching me so many things. Having a proper diagnosis is a relief, and even though every day is a new adventure, it provides me with peace. I view it as a victory that I can be treated properly and manage my symptoms in a way that allows me to live the best life I can.

 

Photo Credit: courtneyk / E+ via Getty Images

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Brooke Buckley

Brooke Buckley

Diagnosed since 2019

Brooke Buckley was diagnosed with narcolepsy in 2019 at age 22. After living with symptoms for about 7 years before receiving a proper diagnosis, she hopes to bring awareness to this misunderstood condition. Buckley is also a trained speaker and advocate with Project Sleep, and she enjoys playing tennis and hiking with her dog, Athena. Follow her on Instagram.

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