Learning how to be an advocate
Kaitlyn Myk-Kish is a final-year PharmD candidate at the Northeast Ohio Medical University College of Pharmacy.
As a student pharmacist, you are taught to empathize with your patients. You are also taught to advocate for your patients and to empower them to advocate for themselves by participating in their own care. Now that I have had to navigate the health care system as a patient myself, I feel that being a self-advocate is often easier said than done. However, the validation and support that follows as a result of being persistent in advocating for yourself makes the journey worthwhile.
Dealing with unexplained exhaustion
After my first year of pharmacy school, I started an internship at a hospital that is 50 minutes from my home. A week into this internship, I started not being able to complete the drive home without becoming extremely tired and falling asleep. It became so severe that I would have to nap in my car at the rest area on the way home, which then progressed to needing naps on my lunch break as well. This terrifying, everyday occurrence prompted me to call my physician. I had several appointments over the next few months to rule out the most common causes of excessive daytime sleepiness, and I started taking vitamin D supplements.
In my second year of pharmacy school, I was having a hard time coping with my constant exhaustion. Most of our classes were hybrid, and I could attend via Zoom or in-person. Attending in-person class was impossible because I knew I wouldn't be able to stay awake during class. When I attended virtually, I almost immediately fell asleep no matter where I was. This made keeping up with classes difficult, and I would end up having to watch the class recordings while taking naps in between. On an IPPE rotation, I fell asleep while researching a topic on a desktop computer in front of my preceptor. I would be late or absent for classes because I had fallen asleep by accident, and my grades were suffering.
This pattern was maintained until I fell asleep during an endocrine pharmacotherapy exam in my third year of pharmacy school, so I called my physician to request a sleep study because something was clearly wrong. They finally ordered me an overnight sleep and next-day nap study, which my insurance company denied multiple times, and it revealed that I had type one narcolepsy. This autoimmune sleep disorder is characterized by an uncontrollable sleep cycle, early onset periods of REM sleep, and sudden loss of muscle tone (cataplexy) caused by deterioration of the hormone orexin.
Remaining resilient
Being diagnosed with narcolepsy changed my life, and I am so proud of myself for advocating for my own health care. I was relieved to finally have a diagnosis. I had the thought that if these tests were inconclusive, would I really have to live like this forever? How would I ever be able to have a career in pharmacy?
Although there is no cure, there is symptomatic treatment and accommodations that alleviate the burden. However, I am doing much better now! I feel like a different person, and I have no idea how I even functioned previously. I tried several medications before I found the right combination for me, but that is not atypical for patients with narcolepsy. The average time to diagnosis is around 10 years, and the average time to find the right treatment combination is around 1 year. The treatments and accomadations do help exponentially, and I’m grateful for my sleep specialist and professors who advocated for me. This whole process is why I am passionate about patient advocacy.
When I started discussing these issues with my physician, they just suggested that I start taking vitamin D supplements and come back in a few months—even though I had said that I was regularly falling asleep while driving. Patients deserve to feel heard and that their concerns are valid.
This experience has taught me to always remain empathetic, to encourage patients and peers alike to be self-advocates in their own health care journey, and to remain resilient through the struggles of life.