Care Partner
Stigma
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!
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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.
Transplant 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.
“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…
Transplant 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
My grandmother, who is almost 90 and does not get around the greatest, said to me this weekend she would like to take a road trip to TN with the "girls" (me, my two sisters, and my mom) but, she understood if that was "too long of a trip for me, considering." I was so hurt. I had just driven 8 hours to see her, its another 8 hours to Memphis, TN from her house. Riding in the car was not an issue for me, and honestly, I am very concerned that it will be an issue for her, but she made it seem like I was too weak, or sick, to make a trip like that. I know she didn't mean it, and she is genuinely trying to care for me, but it hurt. I never have wanted to be seen as incapable of anything (except making my own insulin, prior to transplant).
Frequently people say to me they had no idea, and I don't look like someone who has had an organ transplant. I always wonder what that means... what does someone who has had an organ transplant look like? Do we grow horns, or something? :) When I returned to work, in person, my boss gave me a hug and flat out told me he expected me to be frail looking, and I didn't. He admitted he automatically aged me like 60 years in his head and just expected this frail, stressed, woman to show up at work, and that wasn't me at all. I was glad that he and I could work through that stigma together, and that he felt comfortable enough to say exactly to me what he thought, and how I helped him understand.
I am so sorry that you experience a stigma around your ability to be a mother, due to transplant. I know that children deserve a loving family, but your health does not change that. I experienced this a lot with type 1 diabetes. For a long time women were told that they couldn't have children with T1D, but they can, and the stigma is very hard to break. It's hard to accept that anyone can get pregnant, but the fact that you want to raise a baby, and you want this opportunity, and you would do just about anything for that to happen and can't change your rare genetic disease and therefor you are deemed less qualified hurts. It hurts a lot. I believe that you deserve the opportunity and there are mothers out there looking for a loving couple to raise their child and will set these stigmas aside.
Sounds like we have a lot of work to do to combat these stigmas!! Keep fighting the good fight, and also rest when you need to. Invisible illness is hard on the mind, and the body.
Transplant Patient
you're saying your horns haven't come in yet??? 🤣
I've even noticed that being in the transplant community, that there is no look. We all experience things so differently and how we're doing depends on so many factors. I'm healthier now than I ever was, and I look it, and still I find people are so shocked that I look so good.
I am new to this group, but I feel that in having had a transplant once before and it failing, I felt like a failure and I let my donor down. Its been a challenge being back on dialysis and knowing that even when you have a transplant or your on dialysis you don't look sick to people. I am always looking forward to more dialogue with folks who have been through this.
Transplant Patient
@Berriosa1234 thats such an interesting perspective.
i feel similarly - I had 2 back to back transplants as the first failed almost immediately (first was a partial liver from my brother, the second a liver from a deceased donor 3 days later)
i often feel like I failed, or that I let my brother down
Our bodies are amazing in some respects in how we can overcome a lot of different health conditions and then in other times the body says nope not gonna work. Its quite fascinating. Just know that your brother and my donor gave us a gift even if it didn't always last a long time.
@Berriosa1234 I completely understand how you feel. My heart transplant failed after 16 years and took my kidneys with it. Now being on dialysis and back on the list for a heart and kidney it’s a lot. I worked so hard for many years to keep my new heart safe. I was embarrassed to even tell people I had to be re-listed. It took me a while to realize that there was nothing I could have done differently. This was always going to happen. I didn’t fail or mess up, I started a new chapter in my transplant journey. I’m grateful for the years my first transplant gave me.
Transplant Patient
I love your perspective @ChefAmanda
How are you? I've been thinking about you a ton. What are some ways we can help support you?
Transplant Patient
@ChefAmanda i understand - when my first kidney started to fail I was anxious and embarrassed to share with my dad, who was my living donor… however, it is not our fault! We stayed adherent and did what we were told - it is the drugs we are taking that ruin the organs they are designed to protect! Tacrolimus is causing fibrosis and yet it is the core treatment worldwide..