What Helped You Speak Up for Yourself?

Jeanmarie

I wanted to share a recent guest piece I wrote for Signals, thanks to Tim Fitzpatrick, reflecting on why I chose to speak up after a New York Times investigation on organ donation and how patient voices can help shape the national conversation.

This experience reminded me that advocacy often starts small by speaking up for yourself, sharing your story, and trusting that your voice matters.

If you’d like to read the piece, here’s the link:

https://media.signalsfs.com/p/finding-my-voice-in-the-new-york

 I’d love to hear your thoughts. Feel free to share the small or big ways you advocate for our community. Sometimes it’s as simple as speaking up for yourself during an appointment. Other times it’s stepping into larger spaces, like speaking to Congress or working to change policy. Every voice matters, and your story may inspire someone else to take that first step.

TiaBean

You are an incredible writer, @Jeanmarie. It is no wonder they published it. Advocacy is what sparks miracles. Communication and becoming real with not just everyone else, but yourself, is an exercise. I was afraid when I found out about my cirrhosis. I found the only way to fight that fear was gaining knowledge. My incredible doctors answered every question, and I felt like I asked every single one that could be asked. I was blessed to be able to speak my mind. I have a husband who knows me so well. He's my biggest advocate. Becoming a part of your transplant team, and not just the patient, is so important. Transplant teams want you to be curious and, to be honest, be annoying! That's how they become family. Speak up. Pre, post, donor, caregiver, family. Everyone. Watch the darkness become a lighter.

Dom

I completely with Tia! You really are a fantastic writer @Jeanmarie ! I have so much appreciation for this article and the fact that you chose to stand up in a difficult time. You didn't know the impact your words would have but you took the time to speak up anyway. I think all of us try to advocate in some way and live this life in a way that reflects our gratitude, so to see that advocacy does have an impact is a great inspiration to keep going.

Prior to joining this community, learning from you, Karin and many of our members, it was really my pediatric nephrology team that inspired me to advocate. They stressed the importance of speaking up and I watched them fiercely advocate on behalf which in turn made me want to do the same for others. Being a part of this community and seeing the different ways that transplant recipients make a difference is one of most cherished experiences of my life.

Did you ever imagine that you'd find yourself doing this when you first got your transplant?