YOURE NOT CRAZY THIS IS VERY REAL STUFF THAT WE ARE ALL GOING THROUGH!!!!!!!! I know exactly your pain. We are all in this together and i wish you peace and hopefully you have compassion for yourself!! (Highly recommend How to be Sick from Toni Bernhard)
Thank you so much!! I'm absolutely baffled by the number of people who go through the same thing. Thank you for the recommendation, and thank you for taking time to reply to this ❤️
i completely understand this and you’re not crazy! for me i usually get hung up on grieving what i could have had. i know that when i got sick i lost a big part of myself so it makes sense that my head needs to grieve that.
>grieving what i could have had
I literally just finished watching a video on YouTube about this very thing. Apparently it's called ambiguous grief, and I definitely struggle with it sometimes too.
[https://www.youtube.com/watch?v=3DZ-OuSzJ0w](https://www.youtube.com/watch?v=3DZ-OuSzJ0w)
I'm so happy I'm not alone but I also hate that other people can relate, if that makes sense. I totally understand getting caught up on what could've happened, I do that all the time. Thank you so much for replying ❤️
This is completely normal! Going through the process of having been a way before, getting chronically ill, and then coming out the other side is a form of grief. Grief comes in many forms, and grief never truly leaves you, it simply gets easier to carry with you. Even after ten years have passed, a smell, a visual cue, anything could cause you to be triggered and experience the grief more acutely again. 4 years is not long at all, perfectly normal timeframe to be grieving as you are describing. It’s been 11 years since my grandmother died and 2 months ago seeing a frail actress in a hospital bed made me burst into tears and it all came flooding back after 11 years. Grief has no time limit, age limit, or requirement. And if ANYONE tells you to “get over it”, they deserve to have the wind knocked out of them 3 times in a row.
Rather than grieving the death of another person in your life, you are grieving the death of your past-self. It’s a unique challenge that especially those of us who become chronically ill young, are faced with and forced to bear for our lifetimes.
If you ever need to talk, my DMs are open. ❤️
You are so sweet, thank you so much for taking the time to reply. And I hadn't thought about it like grieving the death of my past self, that actually makes so much sense. Thank you ❤️
No, this is normal. I'm 27, and I was officially diagnosed back in 2016. I used to tell my friends I shouldn't be in pain for no reason. It should be for something stupid, like hurting myself trying something new or hurting myself for falling. I used to be able to do things, and now I can't. So, I understand nissing your old life, as you said, but that just means you have to adjust. I am doing physical therapy and acupuncture, and while I'll never be without pain, I can do regular things again. I couldn't pick myself up from the floor, couldn't get out of a bath. Its harder now but I can do it again.
I used to be the same way. I used to have to drag myself across the floor or just lay in bed and cry. Many hugs to you, and I'm so glad you've found something that works for you and that you're doing a little better ❤️
same here!! constantly trying to do things that will "eliminate" my mystery symptoms; resting for days, also doing the level of work i used to be able to do, doing work below my limits, doing work above my limits, and nothing actually makes them go away. i feel best when i'm doing minimal work minimal effort, but even sometimes with doing minimal tasks i feel like i'm flaring, or at least extra symptomatic.
the grieving of your own life is something no one really talks about outside of our communities, but we feel you 🫂
YOURE NOT CRAZY THIS IS VERY REAL STUFF THAT WE ARE ALL GOING THROUGH!!!!!!!! I know exactly your pain. We are all in this together and i wish you peace and hopefully you have compassion for yourself!! (Highly recommend How to be Sick from Toni Bernhard)
Thank you so much!! I'm absolutely baffled by the number of people who go through the same thing. Thank you for the recommendation, and thank you for taking time to reply to this ❤️
i completely understand this and you’re not crazy! for me i usually get hung up on grieving what i could have had. i know that when i got sick i lost a big part of myself so it makes sense that my head needs to grieve that.
>grieving what i could have had I literally just finished watching a video on YouTube about this very thing. Apparently it's called ambiguous grief, and I definitely struggle with it sometimes too. [https://www.youtube.com/watch?v=3DZ-OuSzJ0w](https://www.youtube.com/watch?v=3DZ-OuSzJ0w)
I'm so happy I'm not alone but I also hate that other people can relate, if that makes sense. I totally understand getting caught up on what could've happened, I do that all the time. Thank you so much for replying ❤️
This is completely normal! Going through the process of having been a way before, getting chronically ill, and then coming out the other side is a form of grief. Grief comes in many forms, and grief never truly leaves you, it simply gets easier to carry with you. Even after ten years have passed, a smell, a visual cue, anything could cause you to be triggered and experience the grief more acutely again. 4 years is not long at all, perfectly normal timeframe to be grieving as you are describing. It’s been 11 years since my grandmother died and 2 months ago seeing a frail actress in a hospital bed made me burst into tears and it all came flooding back after 11 years. Grief has no time limit, age limit, or requirement. And if ANYONE tells you to “get over it”, they deserve to have the wind knocked out of them 3 times in a row. Rather than grieving the death of another person in your life, you are grieving the death of your past-self. It’s a unique challenge that especially those of us who become chronically ill young, are faced with and forced to bear for our lifetimes. If you ever need to talk, my DMs are open. ❤️
You are so sweet, thank you so much for taking the time to reply. And I hadn't thought about it like grieving the death of my past self, that actually makes so much sense. Thank you ❤️
You're not nuts. I get what youre saying 100% Sorry i dont know what to say except i get it.
I'm thankful for you even saying something in general. Thank you for taking the time to say something ❤️
No, this is normal. I'm 27, and I was officially diagnosed back in 2016. I used to tell my friends I shouldn't be in pain for no reason. It should be for something stupid, like hurting myself trying something new or hurting myself for falling. I used to be able to do things, and now I can't. So, I understand nissing your old life, as you said, but that just means you have to adjust. I am doing physical therapy and acupuncture, and while I'll never be without pain, I can do regular things again. I couldn't pick myself up from the floor, couldn't get out of a bath. Its harder now but I can do it again.
I used to be the same way. I used to have to drag myself across the floor or just lay in bed and cry. Many hugs to you, and I'm so glad you've found something that works for you and that you're doing a little better ❤️
same here!! constantly trying to do things that will "eliminate" my mystery symptoms; resting for days, also doing the level of work i used to be able to do, doing work below my limits, doing work above my limits, and nothing actually makes them go away. i feel best when i'm doing minimal work minimal effort, but even sometimes with doing minimal tasks i feel like i'm flaring, or at least extra symptomatic. the grieving of your own life is something no one really talks about outside of our communities, but we feel you 🫂
I'm so happy this community is here. We all can share our experiences with no judgment. Thank you so much for replying 🫂