The way I wish I could get my family to understand this, and also strangers who are uninformed. It hurts so much and I grieve the life I know I will no longer have.
I planned to continue to play volleyball by finding local clubs to join, and rollerblade at rinks.. I wanted to learn how to ride a skateboard. I wanted to work with animals (via shelter work, training instructor or pet grooming, pet sitting, etc). I wanted to achieve so much more.
I loved my jobs, but I couldn’t hold them for long because the higher-ups just thought I was being ridiculous for asking for accommodations, even when they promised I would be accommodated in the interview(s).
But that wasn’t to say I was terrible at the work. I was AMAZING at my jobs. I went above and beyond what they asked of me to the best of my abilities, just for it to never be enough. I was amazing with the people, and diligent with the assignments given.
Even when I started showing symptoms for POTS and began getting my (still ongoing) evaluation, I pushed and pushed to be a good employee, because I take pride in being useful.
Even when my cycles were excruciatingly painful because of (suspected) PMOS and Endometriosis, I still pushed until I HAD to leave early or call in, because I didn’t want to lose my job over things that were well out of my control. It still wasn’t enough.
My employers always assumed it was a quick fix, a ‘go home and rest and come back tomorrow because it’ll be better by then’, but it’s not. It never is.
A lot of people, I’ve noticed, tend to see only a disability, and ignore the things we are capable of, and fire you for it. Even if we’re REALLY good at the work, they look at the 2-4 times we left early due to health in a month and let us go. It stings. And so many other people face this too. It’s not as simple as ‘getting better’, it becomes ‘managing symptoms to barely function’, it isn’t like how able bodied people think it is.
I loved going places and attending meets, and making new friends— being social, attending college. Going out just for a breath of air and to get out of my stuffy room. Now I’m lucky if I can move around the house without collapsing from fatigue or shortness of breath, or pre-syncope symptoms.
The worst part is talking to people who act like being able bodied makes them the one on a high horse.
What they don’t realize, what they can’t fathom, is what I always say: everyone on this Earth is just one step away from being disabled themselves— one wrong move, one accident, one slip-up, and they’ll become the same as the people they act so awful and ignorant towards. And sometimes that’s the only way they learn; sometimes they STILL don’t learn, and that makes me even sadder.
Please don’t take your health for granted. You only have one chance at it, and once it’s gone, it only goes downhill from there. We aren’t pessimistic for saying this, we are being realistic. Life can still be enjoyed when disabled, of course- but it is infinitely harder like this.
Count your blessings. Chronic illness is a difficult bitch.