one of the worst parts of having a degenerative condition is being forced to contend with the convictions of your former self. ever wished you could be ill, not deathly ill, but enough to take a break for a while? i used to. then i got sick, and i realised that break never comes.

i’ll admit it: sometimes i used to lay in bed at night and wish for an accident, not something brutal or terrible, just a middle-of-the-road injury that would give me the chance to take a little break from life to heal physically AND mentally. just an enforced pause.

it should have clicked when i had to go into work on the same day i found out i had 2 broken ribs that that’s not how it works, but hey - it’s been years since i realised denying my own naïveté was futile

and yet within the past few years, i got what i thought i wanted but never actually wanted. i’m disabled now. i’m someone whose chronic pain is so severe i often don’t register the pain itself, just notice my body responding to it when my hands tremble too hard to hold a pen.

i got this reality: i’m 28 and “this is as good as it’s gonna get” is already behind me. i’m 28 and i’ll probably never be able to work more than a 3 day week. i’m 28 and when my boyfriend asked earlier if i wanted to go for a walk with him, i just laughed bitterly in response.

i got this reality: i’m 28, and that boyfriend - who is only 24 - may have to become my carer sooner than we both ever expected. i’m 28 and on top of facing an already insurmountable housing affordability crisis, soon i may have to limit my search to housing that’s accessible.

i’m 28 and i have to rely on my housemates to open jars and bottles and even beverage cans because the tendons in my hands are so weak. i’m 28 and the part of my life that abled people consider “worth living” is over, and WAS over by the time i was 26.

i remember reading a quote years ago by someone with (i believe) a cancer diagnosis, that said something like “when you’re well, it’s easy to want to be sick, but when you’re actually sick all you want is to be well again”. and it’s not that i disagree, because i agree very much

but the unspoken part is the in between. the bit where you’re sick but neither you or your doctors are sure you’re sick. the bit where it’s impossible to see yourself as sick until you’re years into it, looking back on your slow decline and realising actually, this isn’t normal

the unspoken part is all the times along the way you remember quotes like that and think “i do just wish i was well”. the unspoken part is looking back on those times when it wasn’t so bad and knowing that in the future, looking back on now, by comparison i might seem “well” too

i wish i had a snappy philosophical end to this thread, but i just don’t. maybe post-COVID i can follow up on some specialist referrals, but every bit of info i have on my body says that intervention is restorative, not preventative - i am sisyphus and my own body is the boulder.