If I could help people understand 2 things about being disabled - it would be:
We try everything. All our spoons go towards trying to get better. Telling us to “try harder” is cruel.
It’s not fun asking for help. When it comes with strings & gaslighting .. it’s not helpful
We try everything. All our spoons go towards trying to get better. Telling us to “try harder” is cruel.
It’s not fun asking for help. When it comes with strings & gaslighting .. it’s not helpful
Comments
We can do amazingly then suddenly have days, weeks, months, etc. of sliding back
That doesn't make us weak. Shit can happen. I've been snappier and more sensitive lately when I've been ok for months. My spoon drawer had a section fall out and I'm on limited spoons til I can fix it
Also - you often see us at our best because we try not to let people see us at our worst. This does not mean we aren’t sick.
Also, we are not all the same. My autism as an example - I was part of a major study growing up. I AM part of the group that contributed the stereotype for Autism
So many get screwed due to that study, and I get to see my brand of tism be a punchline
People always seem to think there’s some magic fix we just haven’t thought of or aren’t willing to do
When I list where I am at, I get no responses, because people are stunned that these barrier filled rabbit holes exist, or that anyone would try so hard to get out.
Some think that must somehow be my fault, instead of the systemic accessibility barriers...
I think the stress just broke me in every possible way.
1) Husband your energy as much as you can, for when you need to use it or want to use it.
2)Apply for all the assistance you can get, and don't feel bad about it.
Disability is a thief of time and money.
It's such a perfect descriptor of limits.
🦋
I wish you well ... and I would share some spoons if I could.
Not necessarily getting better, but sometimes just being able to keep even-keel.
Doesn't matter the disablement or situation, this still holds true.
Help move the rudder of the boat.
If I ask for help, I am at the end of my endurance.
I try EVERY DAY to keep my disabilities under control, and shame myself when I slip. People are just not understanding.
A non disabled person burns out and can generally rest and overcome it. But if we burn out and can’t care for ourselves - the house of cards comes tumbling down
Knowing our limits & respecting them is necessary for literal survival.
Yeah, I might have 7 ok days in a month (Worse than a healthy persons worst days but at least for me its not half bad), but no; I can't work those days, because its impossible to say when they come or if there's just 3 this month
You couldn't hire me because of that unpredictability.
I understand the same is true for pregnancy sickness and ginger.