More Than Tired

by Vanessa Jimenez | Thursday, Sep 22, 2022
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When I was a junior in high school I had become convinced that an evil spirit cohabited my room with me. Strange way to open a blog post, I know, but bear with me here.听

Starting in middle school I would occasionally hear inexplicable things occurring around me in my bedroom at night. One night when I was in 7th grade, I heard a dog walking around my room, its nails clicking around. It was a week night and I was already tucked into bed, on the verge of falling asleep, a YouTube video playing beside me. At that point I didn鈥檛 own a dog anymore, but I was familiar with what its company sounded like. I knew there couldn鈥檛 truly be a dog walking around鈥 but just to make sure, I checked anyway. No dog. After bolting to my parents room for safety, my confused parents looked around, figured I was being dramatic, and sent me back to bed. I remember hearing the dog again later that night as I was about to doze off. This time it was much closer. I heard nails clicking underneath my bed, and the jingling of its metal tag as it settled.听

I guess you could say that from middle school through my junior year of high school I was one to keep busy, and without a plausible explanation as to what had happened, I chalked up moments like those to paranormal activity. I played for soccer teams, performed with theater troops, and joined as many clubs as I could justify time for. All my classes started with 鈥淗onors鈥, 鈥淎ICE鈥, 鈥淎P鈥, or 鈥淚B鈥, and sleep was scattered throughout my day. I was known for being able to sleep anywhere, a 鈥榯alent鈥 that impressed my friends, and at times embarrassed me (and offended my teachers). I was always tired, but what kid wasn鈥檛? Many mornings I鈥檇 walk into class, plop beside a friend and complain about being tired. I鈥檇 usually get a sleepy 鈥淢e too,鈥 in response.听

It wasn鈥檛 until I went to a pulmonologist appointment in my junior year of high school that my story changed. I have asthma, and the clinic I visited specializes in pulmonary and sleep care. Unbeknownst to me, I was handed a narcolepsy screening test on my way in. At the end of my appointment a sleep specialist slipped into my room to discuss my screening results (apparently saying yes to more than 3 of the questions was a red flag). She asked me some questions about what my life looked like, and assessed some of the major symptoms of narcolepsy that I seemed to be presenting. She asked me if I was tired, and I told her no, because I had actually taken a nap in the car on my way to the appointment (narcolepsy is highly associated with , aka EDS). She asked me about my sleep habits, which were disordered. She asked me about sleep paralysis, which I hadn鈥檛 experienced yet, but I sometimes heard creepy things at night (I would come to learn that this symptom is called a , another symptom of narcolepsy). The doctor thought I would benefit from undergoing a sleep study, and I underwent one not long after.听

Later that year, I was brought into the sleep clinic to discuss the results from my sleep study. I wasn鈥檛 too surprised upon being informed that I have narcolepsy type II, as my lived experiences seemed to line up with many of the symptoms. But the conversation we had was still surprisingly difficult. My doctor told me that there is no cure for narcolepsy, as well as something along the lines of, 鈥測our chronic disease is covered under the Americans with Disabilities Act.鈥 That sentence was a lot to process. Yes, my strange experiences felt reaffirmed and I didn鈥檛 feel crazy anymore, but now I was being informed that my health condition is not only chronic, but also cureless, and a disability. For several years following my diagnosis I struggled a lot with those labels, and my confidence took a hit. I wondered how this would translate into my adult life in the future, as I didn鈥檛 know anybody else with narcolepsy. How was I going to handle college? Would I be able to reliably wake up to my alarms for a 9-5 job once I started living on my own? Could I be able to one day serve as a functional mother, balancing my sleep and a needy baby? The implications were scary and concerning; I was afraid of the consequences of failure.

Accepting my limitations hasn鈥檛 been easy, but getting medicated, working brief naps into my day, receiving accommodations, and improving my mindset has been a total game changer.听 Connecting with the narcolepsy community has also helped me feel less alone (shout out to ), more informed, understood, and less intimidated by my disease. Thanks to the many people in the narcolepsy community sharing their stories, my fears have been eased. In 2020 I received the , and got tips on how to succeed in college from past recipients. I saw people with narcolepsy thriving as a , as a , and one is even an I saw moms with narcolepsy and giving advice to future mothers. Narcolepsy became less of a summary of who I was and more so an aspect of my life. I have brown eyes. I鈥檓 5鈥5. I have narcolepsy.听

. I decided to share my story in order to raise awareness about narcolepsy symptoms and to emphasize the importance of sleep. My story changed relatively close to my onset of symptoms鈥 3 years鈥 but many people living with narcolepsy won鈥檛 get diagnosed until about an . This rare disease , and sometimes the symptoms are misinterpreted, resulting in a misdiagnosis. If you see yourself in my story, please get in touch with your healthcare provider.听

Sleep is often unprioritized by many college students. Lack of sleep and poor sleep quality has been associated with , as well as . According to the Sleep Foundation, . You can鈥檛 literally 鈥渃atch up鈥 on sleep over the weekends, so plan your week carefully to ensure that you can get assignments and studying done within a realistic timeframe, within reasonable hours. I have learned that, at the end of the day (wink), allowing oneself adequate time to rest is both an act of self care and of self love.听