Meet Our Advocate – Iris Vasconcelos
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?
I would like to share a phrase that I mention in my blog, Life in Flashes: Share a Story to Change a Story
Almost a year ago, I was ashamed of having narcolepsy. Fear almost paralysed my life and my dreams. In denying that part of myself, I allowed a door to open that only brought more struggle and pain, so now I urge anyone with a rare disease to embrace and share their story.
It really is true that although we don’t realize it, there’s always someone out there who needs to hear it.
What does advocacy mean to you?
In my head, narcolepsy was like being locked up in a pitch-black cage that I thought had no way out of, alone and drowning in the silence. Advocacy is that moment when you realise there’s another person in the room who managed to escape somehow and was now leaving the wretched prison.
But before they did, they decided to turn around, found the key to your cage, and handed it to you before making their way out. Advocacy for me is showing the same compassion to others who remain trapped, that was shown to me.
What do you wish someone had told you when you were first diagnosed with narcolepsy?
I wish that someone had warned me that the elixir could be just as bad as the infection itself. And that my life would never be the same no matter what I do or take. I was completely unaware of the depth to which this condition would affect me as a human being, and all the ways in which it would slowly but surely permeate every single aspect of my life.
What brings you the most joy (especially when you’re feeling down)?
Hearing that something I did or said, was the cause in helping to make someone else’s life a little better or easier. That is actually the only thing that can lift me out of those dark moments and provide me with the strength to actually get out of bed and honour whatever commitments or responsibilities I may have.
Where do you find support?
I am definitely extremely lucky to have family and friends all over the world who have always allowed me to be who I am and know when to slap me with some tough love if I begin to have pity parties that start to last just a tad too long.
However, I have to say that absolutely nothing compares to the support of the narcolepsy community. During this pandemic, I think I have met some of the strongest, most kind-hearted, and genuine people, I have ever known. Without this community, I honestly don’t know where I would be today.
What is the last show you watched that you enjoyed?
I don’t really watch TV...but I love my Friends re-runs!
What is one meal you could eat for the rest of your life?
What is your favorite quote or saying?
“If you don’t like how things are, change it! You’re not a tree.” - Jim Rohn
Do you relate to Iris' narcolepsy experience? Say hello to Iris in the comments below and tell us more about you!
What is the hardest part of coping with narcolepsy?