What I Lost From Narcolepsy and What I Gained Along the Way

When I first started showing symptoms of narcolepsy, I was a successful honors college student preparing to apply to medical schools.

Within a few weeks, I was ravaged from the rapid onset of narcolepsy after contracting a bad cold.

What I lost because of narcolepsy

Some of the things I lost to this disease include:

Friends

Despite my diagnosis and treatment, I wasn’t even half of the person that I used to be before my condition onset. Friends started dropping off like flies. They told me that they were disappointed in how I was handling my life. At the time, I was killing myself to try to keep up with society’s expectations. I realized that nothing I could ever do would be enough for those around me with my new level of abilities. I stopped trying to please them and started trying to keep myself alive. With this decision, my life became more manageable, but I lost more friends than I can count on my hands because of it.

Promising medical career

It became glaringly obvious to me that pursuing a medical career would not be possible due to my new symptoms. When I gave away my MCAT study books, I felt like I was giving away a portion of my heart. For years, I had defined myself by where I was going. Now, I had to figure out what it was I was living for.

Independence

I lost my ability to drive due to the nature of my symptoms. I had purchased my first car on my own just a few years before my diagnosis. It was my pride and joy. Learning to live without the ability to drive has been difficult, and getting food and medication is a struggle because of it.

Self-esteem

It is common for people with narcolepsy to struggle with their weight due to their symptoms.¹

After my diagnosis, I gained 60 pounds. I’ve since lost some of the weight but still have difficulty accepting my new body. I also have had to shave my head to decrease the amount of grooming required on a daily basis. This was a difficult decision, and I miss my beautiful long curly hair. However, the trade-off of having energy to expend on other daily needs was well worth the sacrifice.

What I have gained from narcolepsy

While I’ve lost so much due to my condition, I’ve gained almost as much in return. It took years to fully accept my condition and to love myself despite it. Some of the things I’ve gained since my diagnosis include:

Community

It is estimated that approximately 3 million people suffer from narcolepsy worldwide.²

From attending support groups for people with narcolepsy, I’ve gained an entire family across the world. These people understand the same struggles that I’ve gone through and have been there for me when no one else was. I will forever be grateful to them and the friendship that they’ve shared freely.

Service dog

Training my own service dog was the best decision that I could have made for my health since the onset of my symptoms. She is my best friend and the most loyal companion that I could hope for. She has many tasks to assist me with my symptoms. When I neglect myself, she is on my tail, making sure that I attend to my health.

Courage to chase what I want

After losing my friends, prestige, and career, I was forced to ask myself what it was that I really wanted in life. I realized that I was hiding so much of myself from the world in the hopes of being accepted by society. Being forced to the edges of society by my disability made me realize that I had the courage within me to fully be myself. I came out as pansexual this year and am in my first relationship. There is still so much hate in the world towards the LGBTQ+ community. However, being able to pursue love in my own way has been well worth the disapproval.

Mental health

Losing so much due to narcolepsy put me in a dark place mentally. I didn’t have my 18 credit hour college schedule, multiple part-time jobs, and extensive extracurricular activities to keep my mind off of the insatiable pit in my chest. I’ve since sought treatment for my severe depression and anxiety. Doing so has allowed me to look my demons in the face. Being forced to face my problems has made a significant impact on my mental health for the better.

Strength

I am a firm believer that anyone suffering from narcolepsy has an inner strength beyond the normal range. This disease weighs heavily on the soul. It steals dreams. It destroys relationships. However, it is not the end. I know now that I am capable of withstanding more than I ever imagined possible.