Meet Our Advocate – Tara O'Connor
At Narcolepsy.Sleep-Disorders.net, we are thankful for our amazing advocates who share their experiences of living with narcolepsy. In our advocate spotlight interview series, we get to know our advocates better and find out why spreading awareness of narcolepsy is so important to them.
What is one thing you would like to share with the community?
Living with narcolepsy has some great challenges for sure. I have never let my diagnosis or symptoms hold me back from doing what I want to do in life. When my sleepiness started in high school, I missed a lot of school and ultimately had to drop out of high school. But I did an online program and finished on time.
Before my diagnosis, I became an EMT, despite my overwhelming sleepiness. After my diagnosis, I finally got it to the point I wasn’t sleeping all the time. I had a job for over a year. People without narcolepsy may think that is not very long, but before my diagnosis, I was lucky to keep a job for more than 1 month.
I am now in firefighting 1 class and getting close to finishing. It has been a struggle and takes most of my energy, but hopefully, it will all be worth it. Never give up on your dreams. I may have to do things a little differently or it might take me a little longer to get to the finish line, but I can absolutely do anything I set my mind to, and you can too!
What does advocacy mean to you?
Advocacy is something that is very important to me. I didn’t start getting into advocacy much until a little over a year after my narcolepsy diagnosis. I look at advocacy as being kind of like my superpower because whether I share information about narcolepsy on my personal social media pages, write about my personal experiences, or help connect with others with narcolepsy, I feel that it just might help someone get diagnosed a little faster.
What do you wish someone had told you when you were first diagnosed with narcolepsy?
I wish someone had told me that just because I finally got a diagnosis after 20 years, it doesn’t mean the symptoms are going to go away.
When I was diagnosed I first thought my sleepiness was going to finally go away. I was wrong. I found out I just had to learn how to live with my new diagnosis and try to manage my sleepiness with medications. My sleepiness has improved, but it is definitely still here and probably always will be.
What brings you the most joy (especially when you’re feeling down)?
I would have to say my niece and nephews bring me the most joy, especially when I am feeling down. Every time I see them, they have big smiles on their faces and say, “Tara!!” They are always so happy to see me and their cuddles always cheer me up.
Where do you find support?
I find most of my support through friends I have met online through different organizations. Most have narcolepsy or have a family member with narcolepsy, so they know what it’s like living with narcolepsy. I have a few friends and family members that try to understand but most still don’t get it.
What is the last show you watched that you enjoyed?
What is one meal you could eat for the rest of your life?
Broccoli Beef from Sushi House
What is your favorite quote or saying?
"Sleepiness isn’t laziness."
Do you have a service animal?