What I’ve Learned From Being Diagnosed With Narcolepsy

Ever since I graduated from nursing school, I’ve felt grateful for the medical knowledge that can help me seek care when I know that something’s wrong with my health. 

But I never thought that I’d undergo testing for a rare disease.

I often joke that turning 30 last year meant that my health declined. In some ways, it did. I ended up attending many more medical appointments than I have in a long time. Why? My skin and my sleep both needed medical attention.

Recently, doctors diagnosed me with an autoimmune disease: narcolepsy with cataplexy, or narcolepsy type 1.

Narcolepsy is a neurological disorder that involves sleep and wake cycles not communicating effectively.

I found myself falling asleep while talking to people, as well as any time I was in the car or sitting still. I’d thought for a while that I had this type of narcolepsy, but getting the test results was both refreshing and disheartening.

I quickly learned that autoimmune diseases can occur at any point in time.

However, I’ve likely had narcolepsy type 1 for years. I remember my knees buckling or me falling whenever I laughed or got scared. I also constantly felt tired and wanted to sleep whenever I could. And I would take 20-minute “micronaps” to increase my energy levels. However, I didn’t think to mention these symptoms to my doctor when I was younger, and I honestly wish my parents had paid more attention to my symptoms.

We didn’t know that I had a medical condition or even that these were symptoms to watch for.

I used to do everything on my own and push my body to its limit, but I now count down the minutes until I can take my next nap. I also find it difficult to run errands or take care of household tasks. Adjusting to my sleep needs and the news that I can no longer live alone because of my narcolepsy is extremely difficult. I wouldn’t wish this on anyone.

Since my diagnosis, I’ve learned that if you have one autoimmune condition, you’re susceptible to other conditions. While I don’t know the exact reason behind this, I know that as I trial meds and adjust my routines, I need to stay aware of how I feel and report potential symptoms to my doctor.

I’ve accomplished many of my goals — including working in health care and traveling to almost every US state — but right now, I need to pause to focus on my physical and mental needs. That’s completely OK. After all, we only have one body and one life, so if you need time to care for yourself, do whatever you need to feel better. Listen to your body, and seek out second or third opinions if your doctors dismiss your concerns. You deserve answers to your questions about your body, and you deserve rest, no matter what others may say.

If you have a chronic illness, I hope you know that you’re stronger than your symptoms. You’ll prevail, and people will help you when you’re at your most vulnerable. Do what you need to care for yourself, and show yourself as much love as possible. A little understanding of your body’s needs can go a long way.

Featured Photo by Slaapwijsheid.nl on Unsplash.