it is exhausting being chronically ill to the point that just existing causes symptoms to flare. it is exhausting being in such poor systemic health that you can't properly take care of yourself.
you can't shower daily. you can't clean daily - not tidying, not dishes, not mopping, not vacuuming. you can't eat normally. you can't just go out to the store, cafe, park, movies, or bar. your world gets so small. just you, your home, and whatever things or pets you have.
so you just spend every single day coping with it all. you wake up in pain or otherwise sick, quite literally drag yourself out of bed. spend hours trying to feel well enough to do anything, even just eat your first meal of the day, or a fresh set of clothes.
and then, once you finally feel okay enough, you do something. anything. just one thing to take care of yourself, your house, your pets. and you're just. back to square one. spend another several hours resting, trying to keep your mind occupied. your mind wanders. days turn into weeks turn into months turn into years.
you look back to see what you've accomplished and it's just. so empty. you haven't managed to meet many more life milestones. maybe you've lost all your friends by now, or are cutting it close - any milestones you did reach just don't feel the same alone. people are tired of hearing that you're suffering all the time. they just want you to push through it. you want to too, more than anything in the world, but you can't.
and there's nothing you can really do. you can go to doctors appointment after doctors appointment. they can watch you deteriorate, and still, nothing changes, nothing helps, nothing works. and yet everyone still expects you to be like other people your age, and fulfill responsibilities that you don't even have access to anymore.
it's exhausting. it's demoralizing. it's enough to drive you crazy or to suicide. you have to comfort yourself through so many scary symptoms, so much pain, so much desperation. and at this point, i'm so angry at people who just get to live their lives without this level of disability, even if they struggle too, it's just.
why are disabled people who can't be independent at all just. discarded? why are we left to suffer in our homes or hospital rooms alone, without company, community, genuine compassion for our suffering that isn't about pushing us to "get better"? why do we have to be so fucking alone?
and why the hell do all of you fucks who can work, drive, socialize, take care of things in life, without all these barriers, think you're so much better than us? so much more worthy of life and friendship and love? just because you've been lucky enough so far to not be so severely ill?
you aren't better than me, or my peers, for being comparatively abled. you aren't. and i'm. i'm fucking done. trying to be like you. trying to smile through the pain and act like i'm just. lazy. or a homebody. when this is all so contrary to who i am and what i want to be doing with my life. you can't imagine what it's like. so please just. believe us.