So much of being disabled is grieving. Grieving the body you’ll never have, grieving the capabilities you used to have but no longer do, grieving friends and family who no longer reach out. It’s a heavy, ongoing type of grief that is compounding.
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Was the anniversary of my graduation yesterday, I've been unable to follow a career I took four years to study part time. I thought I'd found something suitable but I got even sicker.
The grief rolls on, we are constantly reminded of the losses.
It can get pretty lonely, especially when driving isn't an option. Family forgets you exist, forget to invite you to things. Then being told 'you're not around enough' is like a punch to the gut because I would be. I would be if I could, or if people would offer to help me be there.
"we didn't invite you because you usually need to cancel and didn't want you to feel bad for canceling" is something i've gotten that's similar to that. people don't realize that even if we have to cancel or won't be there, *not* inviting us hurts *SO* much more.
I've got that so much! From both friends and family. "They got used to you canceling so you taught them that they can't depend on you to be there so they just don't invite you." But they don't realize that I might have a good day where I can sometimes. & just being thought of, cared about, matters.
yes!! even if you are 98% sure i won't be able to go PLEASE just!! include!! us!! how much feeling loved and supported and cared about can genuinely help symptoms as a lot of people's symptoms become worse with depression, anxiety, etc!!
Yes, very true! Stress and anxiety trigger my chronic illnesses and inflammation, and I have a low threshold. Some of my stress and depression comes from watching my family move on, get married, have kids, and celebrate stuff and I'm just like a ghost sitting here. I'm never informed.
Someone wiser than me once said, "None of us is disabled. Some of us are temporarily abled." Most of us will live long enough to feel what you describe.
I was doing okay for a while. Most symptoms were ignorable for a few years. One day I couldn't lift anything over 15 pounds. Then I couldn't pick up a coffee cup. Even holding my phone was a challenge. I couldn't draw anymore. I had no way to communicate the way I used to. That grief has weight.
When I was first diagnosed, my mom kept assuring me that I would be cured someday. I knew full well that I wouldn’t be. Day after day she would come home with a new diet or a new exercise to try, but having to disappoint her made the grief that much worse.
I got no grief because I was born disabled so I'm my own physical model and life model I never compared myself to what able ppl do. But I can understand that abled ppl that become disabled can feel a grief about lots of things.
This is a sad truth. I have become a different person bc so much of my emotional energy is used to not actively grieve, instead enjoying the life I do have.
This is very true. It helps that I am so much better than when it was at its worst (chronic nerve pain, now helped by intrathecal pump) and it helps it’s been over a decade
I ran into someone else who must be relatively new to disability, who was reassuring someone very new to it that you mourn and then that's over. I had to break the news that the mourning never ends, though it's much harder at the start. You learn to live with it, but it can still suddenly get you.
And I don't want to upset people who've only been disabled, say, two years, and still can't quite believe what's hit them, but have made so much progress!
It's like encouraging people to use the mobility aid that's long overdue, and not telling them about the occasional hate crime that'll go with.
OMG this! I can pass as Abled, but I watched my body spiral fast from being very athletic to being super winded & having to rest, after a flight or 2 of stairs. Lot of EDS problems have been able to come out & hard. The grief of what was lost is not as scary as how much more will I lose & that grief
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Am happy to see you over here from X.
I hope you find here more welcoming 😃 😊
The grief rolls on, we are constantly reminded of the losses.
It's like encouraging people to use the mobility aid that's long overdue, and not telling them about the occasional hate crime that'll go with.