Advocacy and push back

AliEm14

I've been really open about my transplant journey and sharing it online. Most of the feedback has been positive. I've gotten a few comments lately about how I don't act like a transplant patient is supposed to act, or people feeling entitled to know every detail about my medical journey just because i choose to share some things online.

I'm wondering how you all navigate this experience of being open about your journey while also not sharing every detail or putting yourself in a box.

There is so much ableism and tone policing and incorrect narratives out there, and I know it's not my job to educate anyone

Shelbycreates

Wow, that is a lot @AliEm14 I feel like no one has a right to tell you how you should act with your journey. It's your own. And even if someone has had similar medical experiences (which they probably haven't), it's not their place to judge. Unfortunately, we live in a society where people think they can say all sorts of things and hide behind a keyboard.

I haven't dealt with it that much, although I share parts of my story online. I think that when I have healed from what's happened to me, I don't feel like I have to get them to agree with me as much. They get to have their opinions, and I have mine (although mine are always the RIGHT one 😉😂🤣)

I think you just get to do what helps you feel the most comfortable. Sometimes it's to stand up, sometimes it's to block/unfollow, and sometimes it's to take a breath and regroup so you can correct them. Sending hugs- confrontation on the internet is never fun!

Melsamm

What I would like to ask how the hell is a TP patient suppose to act😡 that really bothers me someone would say that to u.

I really don’t share a lot about my TP b/c sometimes I feel they have not been where we have been and seem a little un interested. Another thing I always hear is u really look ok for someone who has had a TP. “REALLY” so w/that do not give those people any thought even the ones who have had TP’s we know how we feel and most of all what we have been thru every one of our journey has been different. I say share what u want w/who u feel care and understand 😊💚

Philipjones17

Hello @AliEm14 I feel like its your journey you have the right to detail what you want known and have the right to keep certain things to yourself.. I have a Transplant journey as well and i dont tell every single thing about it..its no problem at all keeping things to yourself.. never let anyone tell you otherwise.. its your journey tell it how you want to tell it. We would love for you to Come on A Second Chance and tell your story however you want to tell it. Here is a link to our youtube channel (7) A Second Chance - YouTube