Having a disability is much different than anyone thinks.
It’s not the everyday inconvenience of your body literally not working.
It’s not fighting for accessibility.
It’s not sitting around the house all day twiddling your thumbs because you’re getting paid by the government to do just that.
It’s nit-picking literally every single second of your day & every single aspect of your life.
It’s micromanaging your body.
It’s about choosing.
Choosing what your body is up for- what it isn’t.
Choosing what you can afford & what you can’t (usually cutting out vital parts of your care).
Choosing if the task your about to do is worth the pain & recovery time.
It’s about everything you don’t think twice about.
Its more than the inconvenience. And way more draining than you could ever imagine. It’s more than collecting disability. It’s more than a full-time job. It’s 24/7, 365 + a little extra.
It’s endless pain. It’s physically, mentally, & emotionally draining.
My guess is you don’t think twice about when you go to the bathroom. Or when you shower. Or when you run your errands. Or when you feed yourself. My guess is its second nature for you to take care of your needs. You don’t have to think twice about if you can get into X Y or Z. Or if going is going to be more or less frustrating than even bothering to go. Or wondering if the stares and stupid-ass questions are worth it.
You don’t have to think about these things. But I do. Every. Single. Day.
I plan my whole day around it. When I have the help I need, when I have the ride, or when it’s convenient for those around me. My guess is your alarm wakes you up because you have to be up. I set mine because I could find the help & I need to get things done. I live my entire life on someone else’s schedule.
I don’t think you rejoice when you lay down because literally everything hurts & your body just can’t take anymore.
My “job” doesn’t look anything like yours. No, my job is to live a fulfilled life & be as functional as my body will allow.
My “job” is calling SSI to fight for the help I need. Or calling 235829947 doctor’s office to try to find & coordinate the care I need. Or calling the insurance to fight for the medicine said doctor prescribed because “it’s not the intended use” & they don’t think I actually need it. Its talking to others in similar situations to try to find something that might make things easier and more manageable for me.
Any task you do is infinitely harder for me. It either takes excessive planning or uses 10x the energy for me to complete. Or most of the time- is just flat out impossible for me to do.
It’s budgeting down to the penny. Or picking & choosing what therapies you are using this month vs what you want or need. It’s about cutting out the things that make you happy because your health demands your attention and funds.
It’s about choosing what’s worth the energy & pain.
It’s about choosing your sanity or your health.
It’s writing everything down because– brain fog.
It takes everything in me to function day to day. Having a disability is a soul-draining, painful, stressful, & terrible- full time job. A job I never applied for. And one no one wants.
I’m not lazy.
I’m not getting rich off the government.
I’m not over-exaggerating.
I’m doing everything I can + more.
I’m doing my best, even though “my best” looks different every day.
Carli Lyn 