The Importance of Advocacy: What I Want the World to Know About Narcolepsy
I was diagnosed with narcolepsy type 2 in May 2019, when I was 22 years old. At first, I had so much to learn about narcolepsy in general and how I was going to manage it.
I kept my diagnosis to close family and friends. Everyone I told was shocked. I had several people tell me, “I haven’t met anyone with narcolepsy before.” Or ask me, “What is narcolepsy?”
For quite some time, all I really could tell them was to look it up online because they would get a better answer there rather than what I could tell them.
I started sharing on Facebook
Fast forward to August 2020. I became more educated on narcolepsy, and I was getting more comfortable with my management routines. I started to share more on my personal Facebook account.
At first, it was just reposting or sharing other people's posts with information on narcolepsy. I would also start sharing, whenever I felt appropriate, that I had narcolepsy and what I was experiencing. Sometimes I feel like I may talk about it too much, but then I realize I have nothing to lose.
My first World Narcolepsy Day
When September came around, I learned that World Narcolepsy Day was coming up. I joined Zoom seminars with multiple narcolepsy groups and learned a lot of information. I tried reaching out to a few local news companies to share my story on World Narcolepsy Day, but I did not have any luck.
During September, I shared multiple pictures explaining different things about narcolepsy. I also shared on my personal page announcing I have narcolepsy and have had symptoms for 20 years. I was not looking for attention; I was simply sharing with people why I am the way I am.
An outpouring of support
The amount of support I got was unreal. I did not realize I hadn’t told so many people. The people that commented on the post surprised me. Teachers, old classmates, distant family members, people I barely know, etc., commented on my post. I did not realize how unknown narcolepsy is until that moment.
The best part about me sharing my story was that I had 2 people I barely talked to reach out to me asking about my experiences and saying they think they could have a sleeping disorder. That made me feel so happy. This is why I shared my story. Advocacy is so important, and this is when I realized it.
Since all of this happened, I share things on my personal page every chance I get. Advocacy is extremely important to me because it is the strongest way to get people informed that narcolepsy is a real thing and is nothing like the movies.
What I want others to know about narcolepsy
I would say that there are a few things I especially want the world to know about narcolepsy.
I am a person with narcolepsy, and I do not choose to have narcolepsy and to sleep all the time.
I wish so badly that we did not have to sleep as I do. The routines I have to follow to make sure I take my medications at the same time daily, go to bed at the same time daily, take my nap at the same daily, etc.
I think the biggest thing I want people to know is just because I have narcolepsy does not mean I am limited to certain jobs and activities. I can do anything I put my mind to. I may have some obstacles to get there, but I will get there. I have had so many people ask me, “Can you do that with narcolepsy?” or “Won’t your narcolepsy make it hard to do that?”
I think that is just not right to say to someone with narcolepsy. It may be hard, yes, but that does not mean it is impossible.
Why I am a narcolepsy advocate
Advocating for narcolepsy or any other rare disease is one of my passions because if others did not do that, I would not know the information I do or have the support that I do today without it.
The moral of the story is, if you’re comfortable advocating for narcolepsy or any other rare disease, do it because you would be surprised how many people have no clue at all what it is. You could help someone get diagnosed faster.
Is advocating for narcolepsy awareness important to you? If you do advocate, how did you get started? What motivates you? Please share with us in the comments below.
How would you describe your relationship with your doctor?