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Desiree’s Story

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How has your life been impacted by narcolepsy?

Narcolepsy has impacted my life in a variety of ways because it intersects with every facet of my being. Some areas of life that have been affected are my professional, personal, educational and romantic relationships.

Having Narcolepsy has required me to improve my communication abilities to ensure that people I’m interacting with are aware and understand what to expect from me as a person with Narcolepsy. That could mean, I will need to take a nap (or maybe two) to ensure sustained wakefulness throughout the day. It could also mean experiencing cataplexy during a joke or highly stressful moment. I cannot avoid the symptoms or my needs because of the disorder, so instead I learn to manage them through coping strategies.

What is one thing you’d like people to know about narcolepsy and the challenges that you’ve faced?

I have recently learned that I have a tendency to mask my symptoms and often take on more than what I should. I do this because I’ve found that it helps me stay engaged and awake for longer periods. While I’ve now made active changes to balance things better and not take on more than I can handle, masking symptoms is a challenge because it gives outside people the perception that the disorder does not affect my life as much as it does.

Have you faced barriers to care?

I was born and raised in Puerto Rico and my narcolepsy symptoms date back to when I was a toddler if not younger. While I did see a pediatric neurologist for headaches, sleep was never considered an issue because according to my family ‘I always slept well, napping all the time.’ I was never identified with a potential sleep issue until my late teens (17-19) when I was in college and I noticed I was sleeping more often.

It wasn’t until a new neurologist said my sleeping habits were abnormal for someone my age and activity level. In 2016, there were no sleep specialists specializing in narcolepsy in my area. There were barely any generalized sleep specialists. It was this new neurologist who took my symptoms seriously and did his own research. He learned how to potentially test, diagnose, and treat a patient for narcolepsy. I had never attended a support group or met someone with the same disorder until I moved to North Carolina two years later and found a support group and met my first friend with narcolepsy.

In Latin countries, healthcare is not always the most accessible or accepted due to a lack of trust in the community, expert availability for care, and location issues. These rare disorders are even less understood in these contexts when there is already a shortage of experts in remote areas.

What lessons have you learned that could potentially help others with narcolepsy?

I’ve learned many lessons throughout the years as a person with narcolepsy. Some of these lessons have been tough and others have been worthwhile. As difficult as it may sound, the grace that one needs to give themselves will make all the difference. To this very day, I sometimes fight myself to take naps for fear of missing out on being with people I care about, getting behind on a project, or taking a break instead of ‘treading on.’ The reality is that these naps are necessary breaks that give me the strength to sustain myself to do all the things that I not only need to do but also those that I love to do.

While napping is not always convenient, it is a necessary part of my day, and without it, I would not be awake enough to enjoy the rest of my life.

What is one thing you’re proud of as a person who is affected by narcolepsy or idiopathic hypersomnia? 

I’ve been sleepy my entire life, from infancy to now. I do not know a life without this feeling. I learned to cope from a young age even before I knew about my narcolepsy diagnosis.

Following my body’s needs and calls will forever be the thing I’m most proud of. I listened to the feeling that was telling me something was not right and let it guide me to where I am now. I’m proud of my ability to be resilient, persevere, and advocate for myself. Don’t ever give up until you are satisfied… you know yourself best.