What It's Like to Be a Woman With Narcolepsy

I am proud to be a woman, and I am proud to be a woman with narcolepsy. Women are strong, independent, caring, and powerful. There are many women in my life who inspire me to be an even better version of myself.

When I was diagnosed with narcolepsy, I didn’t allow that diagnosis to hold me back. I am still passionate about following my dreams — even if I have to take a few extra naps along the way. In honor of National Women’s History Month, I would like to share what it’s like to be a woman with narcolepsy.

Utilizing the spoon theory

There is a metaphor that people with chronic illness use to explain daily struggles to those without chronic illness. In 2003, writer Christine Miserandino created a metaphor about having a limited number of “spoons” per day. According to the Cleveland Clinic, Miserandino explained living with lupus in this way:

“People with chronic pain start each day with a set number of proverbial spoons. Each one represents the physical and mental energy it takes to complete a daily task or activity. Smaller tasks, like showering or getting dressed, may cost only one spoon, while larger tasks, like cooking or vacuuming, may take three or four spoons.”¹

Living with narcolepsy means I only have a certain number of spoons per day. If I overdo it one day, it is very likely that I will make up for it the next day. When I attended a concert festival for a weekend, I had asked off work in advance because I knew I wouldn’t have the mental or physical energy to do much at all that day. When “Aunt Flo” decides to visit, that number of spoons is even more limited.

Periods and narcolepsy

Once a month, many women experience the same symptoms to varying degrees: fatigue, cramps, migraines, and trouble sleeping, to name a few. Some women may experience certain symptoms more than others.

When I was younger, my periods used to be awful. I dealt with intense symptoms for almost a week straight. It wasn’t until I turned nineteen that I decided to give birth control pills a try — I have been on them ever since.

My narcolepsy diagnosis happened in 2018. The two biggest symptoms I deal with on a day-to-day basis are brain fog and excessive daytime sleepiness. As with most chronic illnesses, some days are easier to manage than others. But without a doubt, my narcolepsy symptoms get much worse when I’m on my period.

Being intimate as a woman with narcolepsy

If I want to be intimate with my partner, being spontaneous isn’t usually an option. Oftentimes I have to mentally check if I have the spoons I need. Have I completed my daily chores or tasks for that day? Do I have somewhere to be later that day that will require the energy to drive? If so, will I have time to take a quick nap before I have to leave?

Explaining it in this way is definitely not considered romantic, and I am grateful to be with someone who is so understanding of me. I have also learned to give myself grace when I am feeling inadequate in that part of our relationship.

The diagnosis of narcolepsy may have been a major change in my life, but I will never let it change who I am — a strong, passionate, beautiful woman.