General
What Helped You Speak Up for Yourself?
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:
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.
1 - 8 of 8 Replies
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.
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?
Transplant Patient
I wrote an article addressing this very question, from a slightly different angle, that came out earlier this year in a Canadian national publication. Being diagnosed so young, and growing up in medical communities, I watched way too many of my friends die. Their stories stay with me, and are the reason behind my advocacy.
(If you're interested in checking out the article I wrote, you can find it here: https://ars-medica.ca/index.php/journal/article/view/2553/519)
Advocacy found me kind of my accident, As I was looking for things to learn about from my first experience with dialysis I wanted to make sure that hopefully no one would go through what i went through and in 2006-2007 when i was first diagnosed and kind of being rushed into it with no true proper education. I learned i wanted to advocate for myself to give others a chance and help them to understand they aren't alone on this crazy journey. I learned to speak for myself while at my appointments and definitely at my dialysis clinic and sharing my symptoms with the nurses and techs. @Jeanmarie so pround to know you and to echo everyone else your article was well written. @AliEm14 your piece is simply amazingly written as well and helps me to see a side of transplant as young child and that is one thing i didn't have. my life changed for me twice. i guess first when i was born in 1980 and then again in February of 2006 when I found out I had kidney failure. i guess as i go off on tangent i appreciate this community of advocates so very much, you all keep me going in my good days and my bad days -Alex
Your writing feels like a deep exhale. You are one powerful advocate, my friend.
Thanks!
Transplant Patient
You are all beautiful writers - in this forum and beyond!
We advocate for ourselves and for those similar to us - and sometimes even further away. I love the feeling of letting some of the toxic experiences and painful stuff be released through writing. Seeing it in print is both sad and rewarding. For twenty years I never shared my pain and my disease. I only dug deep into science and my actions were all about proving that I was not sick. Then I got REALLY sick. Advocacy helps
You truly are an inspiration. Thank you for sharing.