General
Disclosure of transplant status
June 27, 2022
in General
Personally I am not ashamed, but it is not the first thing I tell people...
As a single Mom, I am careful not to seem too vulnerable, but I have no issues sharing my status as I get to know people...
- Disclosure of transplant status5 votes
- I tell everyone I have a transplant100.00%
- I never disclose I have a transplant unless extremely necessary0.00%
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Transplant Patient
@Karin - 👍
Most times, especially if I'm meeting someone for the first time, the topic comes up fairly quickly (I raise it). Even in an intro/interview situation.
I also often bring up the importance of being a registered #OrganDonor.
This is a very interesting topic, I have not quite figured it all out. So, I have a mix of responses. I am very proud of my heart transplant, what I have learned, the people that have helped me, my donor. The science is of it is super cool, the humanity of it deeply moving. I find organ donation and transplant it to be so beautiful, it is inspiring. A beautiful example of humanity that protects and lifts my soul. There are opportunities where sharing my story can help, do good, I am all over that.
But I have also had very painful social conversations where people reacted to my story with horror or insensitivity. Example, after telling someone I had a heart transplant they asked me "how was my donor doing?" I burst into tears and blurted out that they were dead.
So for now, I decide opportunity by opportunity. How do I feel? Vulnerable, strong, purposeful, fragile, etc.
I share what I want to share when I want.
Transplant Patient
LOVE THIS! I've said this so many times - just because I choose to share a story at one moment doesn't mean I have to in the next moment. I don't owe anyone anything.
Living publically, and using my story to educate, takes a lot of emotional labor that I sometimes don't have. And its not our job to educate people. Patients educating when they do have the emotional energy, having saved resources, google, all of these things exist, and need to be better utilized over this instant gratification "This is your life so its your job to educate me now" kind of attitude I've seen a lot of recently
Transplant Patient
@Skalbus - thank you for sharing. Great attitude & plan 👏 👍
I am definitely not ashamed but it is not the first thing I tell people. I don't want people to define me as a medical miracle until they've gotten to know who I am. I am much more than my transplant.