General
Get Well Soon
What do you say to people who tell you to "get well soon?" Like I appreciate the sentiment, but there is no getting well. I am well, it's just that mine looks different than yours. My health journey doesn't fit on the illness, diagnosis, recovery arc that society loves. And as we all know this can lead to feeling like you have to "perform" for others to make them more comfortable.
@Aklowak and I were talking about this at lunch the other day, and how we both tend to come at it from the sassy "thanks, I won't" perspective, but I'm curious how you handle these moments.
One of the writers I adore, Sophie Strand, wrote about this on her instagram today. She's a disabled creator, and I really admire her perspective and insight.
"I am not feeling better. I may be feeling worse. But I am feeling with every part of me. Can you feel with me?"
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I LOVE this topic. Honestly, I think it really depends on context. If it's someone who is just saying something in passing and doesn't really know about my situation and who I don't really want to "get into it" with them, I just say "thanks". I think, "they don't know what to say and it's a socially acceptable way for them to tell me they are wishing me well".
For people who are closer to me and who I think it's important for them to understand my reality, I'd go with the way Sophie Strand says. I tell them, that's not really my reality right now. I will always have kidney disease, but right now I'm doing _____ (fill in the blank with what's going on) and I give them a specific way for them to support me, if that's what they want to do.
It could be telling them, "I'd rather you not comment on my health without me bringing up the topic first" or "Would you come over and help me with x,y,z, project because I'm just not getting to it due to my body's recovery right now."
These days I'm doing really well, but I think it's so important to keep the communication open with the people who are really close to you, so they know how you're actually doing.
I hope that answers your questions.
I'm curious to hear other people's way of dealing. Please share below!
Transplant Patient
Being someone who is really open with my health, a lot of people just kind of assume they can bring it up with me, and I've had to use the phrase a lot "I'm not willing to talk about this right now" or "I would appreciate you not bringing this up." I love that you brought this up, because it's one of the things I've noticed a lot of, especially in the chronic illness and disability communities. People feel entitled to your personal medical history, and when you think about it in reverse it seems so strange! Just another way ableism has played a role in our society.
I love that you tell them your reality and say ways they can support you. I started doing this recently, because I've found a lot of people want to help but what might feel supportive for them might not be supportive to me. I always think of the obvious like making a meal, or having my house cleaned, but I have a friend dealing with cancer right now and she said to her community "It would feel really supportive to me to be able to get my hair cut and have a self care day today. I can't do that because x,y,z... how can we make this happen?"
Asking for what you need is a big one, and then letting people help!
I agree with @Shelbycreates my response is dependent on the person I am speaking with.
I have several children who were still in school when all of my craziness started and so I have had several well meaning teachers and caregivers, support staff and such all give the old “hope you get well soon” and I just smile and thank them- but friendships are worth the work I put in to educate and take the time to state that getting well is not an option I get, and it’s time to let the flippant term “get well soon” to just be on hallmark cards and not in friendships. I will however be sassy with family, healthcare workers and close acquaintances who know enough of my situation to know that’s a pointless phrase to use in interactions with me. My standard response in these situations are “I won’t “ and then I just let it hang in the air so it’s a bit uncomfortable 🤷🏼♀️
Just out of curiosity what would u like them to say to you!
Transplant Patient
Most of the time I prefer people not bring it up unless I do. But I get that people mean well and want to show support, so things like "I'm thinking about you" or "Is there any way I can help?" work for me. Actions mean far more to me than words - anyone can say they are sending thoughts and prayers or well wishes when things are rough, but the people that actually follow up and send check in texts, or bring meals, or offer to walk our dog, that really means something to me. Get well soon just shows ignorance to me, and I get it because this is one of those things you don't get until you get, but it's frustrating when people don't even try to make an effort to understand what I'm going through.
If you're trying to learn, I'm more than happy to talk about my situation. If you are wishing me well because you want to feel more comfortable about the fact that I'm dying and have a stranger's organ in my body, I'm going to be sassy and probably have an attitude with you
Absolutely get it! I was trying to understand and what I meant is that we r on a TP group and really don’t know each other and b/c we live so far away from each other just wanting u to know that I am thinking of u and hope u r well because I have followed your story on Transplantlyfe. I was not trying to make my self comfortable by saying that to u, I really care and that’s why I am on this site.
I like your sassiness to.
Transplant Patient
Yes! It totally depends on the person. I know you're coming at it from a place of not being uncomfortable with my experiences, so I wouldn't respond the same way as I would if someone I barely knew said it to me in a grocery store.
I think in general we should just get rid of the phrase "get well soon" and instead focus on how can I support you?
I agree with you and I now completely get where you r coming from. Yes we should, I just never thought about it until u brought it to my attention❤️
I really like how can I support you. Thanks😊
Transplant Patient
When people ask me how they can help, I feel like the burden is put back on me not only to manage my health, but to come up with some way for people to help me.
I've figured out a few things I need that I can easily suggest:
-send memes
-doordash or uber eats giftcards
-care packages for my kids
-babysitting so I can have some space/time with my partner
-drop off food without asking us when, what, and if we need it. i assure you it will get eaten
I know this is a little off topic but: It used to really bother me when people would say, "So Timmy is all better now right? He had his transplant."
UGH!!! anyone else with me?!?
No he's not better. We traded one disease for another complicated life. He takes medicine to keep him "Healthy" every day which often leads to him getting sick because his immune system is supressed and spending time in the hospital. Especially that first year post transplant. But sometimes the 5th year post transplant too.
Especially eh 5th year where we were in and out of the hospital every month for 7 months. The issue is people want the best and they want to believe the best. They are naive, which isn't a bad thing. But it is reality and sometimes making them see that he isn't better is more complicated then not and then they wish they didn't ask and won't next time because we unloaded our burden on them.
I find it better when we find our people - here in this commuity - who truly understand because it is easier to sympathize and care for them appropriately.
Transplant Patient
@brookegurrad yes! Far more often than not I’d rather people just do things! Offer to help, don’t just put the burden back on me to think of things! If I have a specific need I’ll voice it, but often it is just something like checking in. Knowing people are out there helps ease some of that mental burden for sure
Transplant Patient
@authenticallyapril yep! Sometimes I use this as an opportunity to educate on transplant, sometimes I just roll with it, sometimes I’m sassy about it. It depends on my mood. The best thing anyone ever said to me was “it’s not your job to educate me on your disease. I can google it.” 🙌🏻🙌🏻🙌🏻
transplant isn’t a cure, or a fix. It is just trading one thing for another. People don’t get that, they like the all better, neatly wrapped up inspirational story. I’ve been asking myself how I can live in this middle ground, letting myself not be easily defined by human definitions of health and healing