Care Partner — TransplantLyfe

Care Partner

Stigma

KarinTransplant Patient
August 23, 2021 in Care Partner

Has anyone experienced stigma due to transplants? That we are weaker, less resilient or just less as people? Even worse, a feeling that society spent money on us because we failed in our disease and now need hand-outs?? Provocative- I know, but I have at times!

1 - 4 of 4 Replies

  • ChefAmandaTransplant Patient

    I have been told I don’t look like a transplant recipient. I always ask “what does transplant recipient looks like?”

    When I had to be re-listed I felt like I failed, like I messed up some how. It took a while for me to realize there was nothing I could have done differently.

    August 25, 2021
  • AliEm14Transplant Patient

    I felt far more of a stigma pre-transplant when I looked more sick (whatever that means). Now I feel like I get the stigma of not looking like a transplant patient, of being congratulated on my weight loss (when in reality it came from having a working organ again, and all the weight I gained pre-transplant was from toxins building up in my body). I get a lot of the stigma around being 'too healthy' if that's even a thing. It's like yes I'm healthy now but I'm also still a transplant patient, and my normal is very different than someone without a transplant.

    August 26, 2021
  • MarkliveTransplant Patient

    “Normal”

    that word.

    we have to get used to a new normal.

    “you look normal”

    nothing about us is normal. And that is okay! We are alive. And (hopefully) we are compliant in our self care.

    non TX people will never understand our experiences. Hopefully. I would not wish that on anyone. However, what we all learned, they don’t want to.

    the sun rises…

    August 26, 2021
  • AliEm14Transplant Patient

    Between the day this was posted and now, I experienced an all new kind of stigma around being sick/having a transplant. I've talked a bit about how my husband and I lost our first pregnancy, and how it was the reason I ended up needing a transplant. I recently found out, after months of trying to adopt internationally, we won't be able to do so because, with my transplant, I'm deemed too high risk. And I've experienced this new kind of stigma where I feel like because of my health I won't be able to be a mom, or I won't be a good mom, or somehow the world is keeping me from having children. It isn't a stigma that is purposefully put on me by others, and it's less obvious, but now that I'm aware of it I can't turn it off.

    Or like this weekend I wore a bikini at the beach and someone made a comment of didn't I feel uncomfortable showing my scar like that. I didn't, and never have, but somehow society has put this expectation on me of how I should act as a transplanted individual. It doesn't bother me, and I don't follow their rules, but it was interesting to look at

    September 7, 2021
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