Meet Our Advocate – Judy Ferguson
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?
You are the expert on your body! No one else can know exactly what it feels like to walk in your shoes. So nobody EVER has the right to invalidate your experience.
You are also in control of your medical team. If you aren’t happy with the answers, care, or support that you are receiving, you are allowed to find new medical professionals and seek other opinions. I know that it is exhausting to seek answers and treatment, but one day it will all be worth it.
What does advocacy mean to you?
When I was going through the process of being tested and diagnosed with narcolepsy, it was my fellow advocates who got me through that time. I could turn to their blogs and posts and it would make me feel less alone.
I just want to help others who were going through what I did to know that they are not alone. I want them to feel seen and understood.
What do you wish someone had told you when you were first diagnosed with narcolepsy?
“Let yourself rest, and don’t feel guilty for putting yourself first.”
In the past, I never let myself slow down. I had to be everything for everybody, and my needs came last. But my narcolepsy diagnosis taught me that I needed to rest, and look after myself. I learnt that if I put myself first and care about my needs, then I actually have more capacity to be a better partner, daughter, and friend. So if I need to nap, I just do it! No guilt or shame attached.
What brings you the most joy (especially when you’re feeling down)?
Making music! I love that feeling of sitting in a room full of like-minded people, putting all of your worries aside, and creating beautiful music together. When I’m performing I have no choice but to be in the moment and focus on the task at hand. It always manages to pull me out of a bad mood and bring a smile to my face.
Where do you find support?
I have met some amazing people in the narcolepsy community online who are great to chat to and make me feel less alone. I also live with my amazing partner and best friend who care so deeply about me and support me in every way possible.
Even though they may not understand first hand what it is like to live with narcolepsy, they listen to me when I need a shoulder to cry on, or a soundboard to vent to!
What is the last show you watched that you enjoyed?
What is one meal you could eat for the rest of your life?
Steak and mashed potatoes!
What is your favorite quote or saying?
“The sun will continue to rise and set, regardless of what you achieve.”
Do you relate to Judy's narcolepsy experience? Say hello to Judy in the comments below and tell us more about you!
Do any of your family and/or friends also have narcolepsy?