With Narcolepsy Comes Loss
Last updated: May 2022
I have not had narcolepsy my entire life; my narcolepsy symptom onset occurred in my college years. Whereas some people are diagnosed with narcolepsy very early in life, I was instead drop-kicked into a new disability virtually overnight. I’ve had to relearn how to live with this condition.
In some ways I am thankful that I had the chance to experience life with full wakefulness. In other ways I wish I’d been born this way so I would never have had to mourn what I lost and can never get back.
I've had to totally rethink my career because of narcolepsy
Before the onset of my symptoms, the world was more open to me in terms of professional advancement in research and medicine. Being able to work endless, long shifts is a prerequisite for many medical careers.
With my narcolepsy symptoms, I struggle to work longer than an hour at a time without falling asleep uncontrollably or experiencing debilitating brain fog that prevents me from being able to think effectively. I’ve struggled to work in many jobs and had to totally rethink my career because of my symptoms... multiple times. This is one of the largest losses I’ve faced due to my narcolepsy.
Medical school would prove to be too much for my symptoms
Before my narcolepsy onset, I was on my way to medical school. I graduated summa cum laude from Arizona State University and their Honors College. I was a full-ride scholarship student, first ever to graduate from a university in my family, and I planned to enter medical school after getting my M.S. in Applied Biological Sciences.
It soon became clear to me that medical school would prove to be too much for my symptoms, largely due to the fact that no disability resource offices were provided on campuses for medical school students. I didn’t want to spend years navigating a system built against me, without anyone else to advocate for my educational needs. My undergraduate years had been difficult enough.
Accommodations have always been difficult for me to access
I’ve always been hard of hearing, and when I was in college my accommodations were pitiful. Closed captioning for my lessons was often late, meaning I had no time before tests to access the material. My professors fought me when it came to needing assignment extensions or classroom accommodations due to my narcolepsy.
I did not want to relive these struggles in medical school, especially since they would likely worsen without a campus disability resource advocacy center to help me acquire accommodations.
Working as a lab assistant was fraught with struggle
I worked as a university lab assistant... until my position ended unexpectedly early. I was told to come back “when [my] symptoms improved.” This was despite the fact that I had acquired adequate funding for the lab just a few months prior with a successful grant proposal.
This position had fieldwork, which was difficult with my symptoms due to driving long distances to natural spots and the physical exertion involved in our data collections. This position also involved data analysis, which grew to be too much for my symptoms; any span of time analyzing numbers with my narcolepsy, and my brain fog and fatigue kicks in.
Realizing I have always been enough
Finally, my favorite part – the lab work. Before narcolepsy I had never created contaminated samples in the lab. This changed with my symptom onset. All of the skills that I had spent years honing were suddenly unavailable to me. I hated myself for not being enough.
I realize now that I have always been enough. Finding connection through narcolepsy support groups and talking through these common losses has been healing for me.
Have you experienced loss with narcolepsy, whether it be in educational, career, or personal pursuits? Is it difficult to consider these losses and still show yourself compassion? Share with us in the comments below.
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