General
Acknowledging the hard days
When we’re sick, and struggling, seeing inspirational stories and people thriving can feel horrible. Please tell me I’m not alone!
like I’m really glad person X is at the gym and crushing a workout but I can’t get out of bed today.
i find a lot of solidarity and comfort in people sharing their hard days. The days we don’t share because we’re too worried about sounding like we’re complaining or we’re not grateful. it makes me feel a lot less alone.
i saw a video recently where the creator, who also had chronic illness, spoke about how it’s ok to rest, to take naps, to just want to sit and slow down. It doesn’t have to be all thriving and milestones and accomplishments. And how can we honour that?
So I’m curious how can we create a more inclusive conversation for our hard days, and acknowledge the both/and that comes with living with transplant?
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I always acknowledge my tough days. I usually only do that with fellow chronic illness friends or close friends or family. I am usually afraid the rest of the world won't understand and see it as being ungrateful or complaining. So I keep those feelings and share them with people I know will understand.
I sit with those rough feelings for as long as I need to. It helps me to stay off social media and reconnect with myself with a walk at the beach, meditation or even just watching a sad movie to help me cry it out.
I feel like acknowledging our tough days makes all the other days even more special and beautiful.
I always thought I was the only one still not able to walk very far or have trouble getting back in shape. You all seem to have it altogether but boy not me. I don’t share much how I feel with my friends and family. I think I try to protect my loved ones from the stress because they all went through so much before and during my transplant that I want them to think I’m ok. I can do pretty well until I get thrown a curve ball like last month and had to have another biopsy done Thursday. I did share my fears but only with 2 people. I try to put on a happy face and go right on as if I feel great and nothing is wrong but yes some days it’s so hard. I beginning to think I need to share more of my bad days , my fears and how everyones expectations aren’t necessarily what my post transplant life is right. I think it will help
me. Thanks for bringing this up!!
Hi to everyone, All that you all said about the rough days resonates with me to. I have always been a very private person thanks to my mom, she always told me you don’t tell people your business so I don’t. I have to keep that strong front so everyone thinks I have it together. I don’t always, I cry in private, and try to just deal with things.
I have always been the caregiver in my family I was there when both my parents went thru cancer, when I got sick I think people were like she can handle this. Most of the time I do. I have been thru 1 rejection 🙏🏻 that’s it. I recently had to have a bone morrow biopsy which totally blew me away. I was like what’s next on this TP journey. I took my self and was not thinking it was going to be that bad “wrong” so glad it’s behind me. I am awaiting results. I to like Deb shared it w/my brother and 4 other friends. Like Jeanmarie mentioned I am having a rough day/time so I go on my walks with my pup, eat something that I shouldn’t but it makes me feel better😊My brother lives 12 hrs away so I try not to worry him. When I need him he will be here for me.
I always remind myself how blessed and grateful I am. Life is so good, I am already thinking about getting out in my yard, planting flowers enjoying the sunshine in my face. So long winter come on spring.🌻😎🌈
Deb 🙏🏻 you get good results on your test to.
Happy 🐣 Easter🌻🌼
Transplant Patient
@Deb @Melsamm love this. I acknowledge my hard days too, to myself or close friends/family. And still I get comments like I must have it together, I know what I’m doing… I think that’s one of the down sides of social media culture. We’re all so quick to share our wins, our celebrations, the vacation or the award. And when it comes to struggles, we’re so used to curating that highlight reel, to pretending to the public we’re fine.
I’m also wondering more if there needs to be more public acknowledgement of bad days. Because I don’t know a single person who has it together, but I know a lot of people who pretend they do. We’ve traded authenticity for curation, and being on the other end of that when I’m in a rough place myself can feel really bad.
AliEm14
You’ve made a great point, maybe we need to share our bad days as well as the good ones. Seems like everyone thinks oh you’ve had a transplant now you are better and you need to get on with life. Well it just doesn’t happen that way not for me anyway. I’m just not one to complain too much especially when others have no idea what I’ve been through. I guess I do put up a good front and try to stay strong. I am the one who takes care of everyone in the family and the one who checks on friends and family to make sure they are ok. I feel like I don’t have time to feel bad or down. I am thankful to have this group to share with and its helped me to feel more “normal”about my feelings and health issues. For that I am really blessed.
I have the hardest time acknowledging the hard days. I had someone share with me this:
"I am not okay today.
So, in the absence of okay, what else can I be?
I can be gentle. I can be unashamed. I can turn my pain into connection I can be a student of stillness. I can be awake to nature. I can sharpen my empathy against the stone of my discomfort.
I am not okay, but I am worthy of things."
While I appreciated the message I also was offended by the line "I can be unashamed". I am unashamed of my pain, and at this particular time I was honestly sharing to keep others informed and I needed some encouragement. Sometimes, I think its okay to just not be okay and acknowledge it.
I totally agree with all of you. I am tired of people I talk to and start to share with them, they want to top your illness and feelings.. WHAT the HELL!!! so I go back into myself. I am going to definitely start acknowledging to me that I am having a tough day, I am not going to push myself to do my workout just take a moment for me, I feel I always need to be moving if I don’t I think I am being lazy. I know a lot of this is from my up bringing. Yes Tservold the word a unashamed.
One thing that can make the aches and pains harder is when your loved one also thinks you should never complain about anything now that your life has been saved. There are so many little, and some big, ailments that result. My biggest have been compression fractures and rotator cuff tears due to loss of muscle. Seemingly unrelated to an LT, but definitely connected. And they really hurt! And that is my vent for the day :)
I think it’s important to note that this world is such a rat race and any sort of rest is often looked at as “Lazy”. I’ve had to let go of the idea of “should” and “supposed to” in regards to what i’m doing. I often would guilt myself out of resting by placing a lot of shame on myself and comparing myself to others but when I realized that even the average person is often ignoring their need to have True Rest - It made me approach it differently. I think rest is incredible productive especially if you’re allowing yourself to have true rest instead of a false feeling of rest where we are still being overstimulated by phones and other things of that nature.
Transplant Patient
oooh yes! There's this huge cultural narrative that worth and value is measured by productivity, and that resting means you're lazy. I think that's also linked to trauma (hello transplant surgery) and our brains are so used to being in activation, high stress situations we're literally unable to regulate and rest. I can't speak for everyone but that's definitely been the case for me, and I've had to actively "work" at resting.
I find there's so much emphasis on survival and just getting through and staying alive, and then you come through transplant surgery and there's this really disorienting experience of what do I do now?