Meet Our Advocate - Vanessa Smiley
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?
When I realized I had several and/or rare medical conditions, it didn’t change who I was, it only gave way to an awareness of how I could know myself better. I struggled not with the diagnosis, but more of what I could do now that I knew something could be done. Knowing the condition though gives you power to understand oneself in a different way rather than fighting what you couldn’t know on your own. The more I learn and speak to others, the greater the awareness as well.
What does advocacy mean to you?
Advocacy is a way for me to share the experience of extraordinary as well as the journey that makes having a rare disease known to others. As humans, we have things both similar and different, yet when presented with something beyond our scope of knowledge, it can be profound to know more about it. I find solace in the catharsis related to sharing not only my story, but providing information to my family, friends, and strangers about why it’s important to understand the challenges faced by having such a condition.
What do you wish someone had told you when you were first diagnosed with narcolepsy?
Having a diagnosis isn’t going to make life easier or bring back the years you have suffered, but it can bring you closer to others that also have the same condition and guide you to a place where new assets can be found. Support groups are not just for people with mental health or addiction issues, but also for finding resources when you have none otherwise. A medical doctor can prescribe medications that may or may not work for narcolepsy (with potentially significant side effects), but a group of people on the same journey may help you through the hardest parts.
What brings you the most joy (especially when you’re feeling down)?
Spending time with those I love the most especially my children, friends, and family. When I don’t know what to do, I can always go to someone that helps me through the lows. If I can’t find comfort in people or pets, I find joy in nature, reading and writing.
Where do you find support?
My friends and family can be very supportive, especially my mother and best friend, Christie. Sometimes my cats are supportive as well, yet they like being more supported than supportive. My Wake Up Narcolepsy support groups and friendships give me the special place to go that makes me know I am not alone on this journey.
What is the last show you watched that you enjoyed?
One Piece (anime series)
What is one meal you could eat for the rest of your life?
What is your favorite quote or saying?
“Success is counted sweetest
By those who ne’er succeed.
To comprehend a nectar
Requires sorest need.” - Emily Dickinson
Interested in reading more about Vanessa's journey with narcolepsy? Read her articles and say hello to her in the comments below.
Do you feel that your doctor understands narcolepsy?