I’ve been lying about my pain. But not anymore.
Most people in my life have no idea I’m in pain every single day.
It’s a truth I’ve kept to myself since I was a kid. Even the people closest to me don’t know.
But at our PC Patient Support Meeting in San Diego just a month ago, standing in front of a room full of people, I came clean for the first time.
Hi, my name is Jack. I’m in pain every day. And it sucks.
What a relief it was to finally say that out loud!
I’ve lived with Pachyonychia Congenita (PC) my entire life. And I’ve also lived in silence, hiding my pain and hiding the truth.
Why? I hate seeing that look of pity people give me. I don’t want pity; I want this pain to stop. I’m also tired of explaining this disease to people who just don’t get it. And sometimes, I just want to feel “normal.”
So I smile, pretend I’m fine, and tough it out so I can “fit in.”
But here’s what I realized in San Diego: Hiding might protect us from uncomfortable moments but it costs us the connection, community, and healing that comes when we step into the light.
That’s why this June, for PC Awareness Month, I’m telling the truth. And I invite you to join me.
Our theme is End the Pain:
- The physical pain.
- The emotional pain.
- The pain of being treated differently.
- The pain of feeling alone.
Here’s how you can help:
- Share your story on social media to help raise awareness
- Use the hashtags #EndThePain and # PCAwareness so we can find each other
- Donate to fund the research that will finally bring relief
The fastest path to a cure is to stop pretending everything’s fine and start telling the truth. We need our families, our doctors, and the world to know what it’s really like to live with this misunderstood disease.
Together, we can end the pain — but only if we stop hiding.
This is me coming out of hiding. Will you join me?
With love and gratitude,
Jack Padovano
Board Chair, PC Project
#EndThePain
#PCAwareness
P.S. One more thing: Thanks to a very generous PC Project donor, all gifts made during the month of June will be double-matched! That means donations for PC Awareness Month will have three times the impact! Please spread the word!
