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General

Disclosure of transplant status

KarinExpert
Transplant Patient
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...

  1. Disclosure of transplant status5 votes
    1. I tell everyone I have a transplant
      100.00%
    2. I never disclose I have a transplant unless extremely necessary
        0.00%

1 - 6 of 6 Replies

  • Sdey0522Transplant 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.

    June 27, 2022
  • AliEm14Expert
    Transplant Patient

    I have no issue disclosing I’m a transplant recipient. I live in a small town so a lot of people have heard about me or my transplant even if they don’t know me super well, which is fine.

    recently I’ve had it used against me for the first time. My husband and I are in the process of adopting a child, and my transplant status was used as a reason why I would be an unfit parent. My doctors wrote letters, medically there is no issue with me being a parent or not being healthy enough, but the fact that this group of people who clearly don’t understand transplant or what it means could use that against me was really hard to comprehend. I don’t think it would ever stop me from sharing - I’m not ashamed of who I am or how I survived, and if anything it shows me we need better information out there for people - but it definitely showed me how some people view transplant recipients and the profound ableism there

    June 27, 2022
  • SkalbusTransplant Patient

    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.

    June 28, 2022
  • AliEm14Expert
    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

    June 28, 2022
  • Sdey0522Transplant Patient

    @Skalbus - thank you for sharing. Great attitude & plan 👏 👍

    June 28, 2022
  • JeanmarieTransplant Patient

    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.

    August 5, 2022
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