chronically ill/physically disabled people, how do you deal with doctors appointments? what do you say/do to advocate for yourself? im autistic and not diagnosed with a chronic illness yet and i really struggle to know what to say to get them to listen to me and understand so that i can get the help and care i need. even if i bring someone with me, they also need to know what to say and i don't know anyone who understands well enough to explain to the doctor for me, which means that i have to tell them what to say before going. but that's the problem since i just don't know.
i have chronic joint pain that ive had for years but has only gotten worse over time. i also have hypermobile knees which are the worse they've ever been right now. i'm chronically fatigued and barely have the energy to eat and do basic hygiene. i have a few friends that i talk to fairly regularly and im very thankful for them but i still struggle so much with maintaining a social life when i cant even maintain my own physical wellbeing. i only go outside when i absolutely have to/when my pain is low enough and i have enough energy. on average i probably leave my house about once or twice a week, usually to go to medical appointments, to an internship i have once a week or to go grocery shopping. i usually try to do both at the same time if i can (like going grocery shopping after my internship) but most of the time i have to ask my parents to get me groceries since i dont have enough energy to. all i want is to be able to go outside just to take short walks and enjoy nature and the fresh air but i can't do so without the right treatment/a mobility aid. everything im doing right now is bordering the line of too much. im constantly tired and overwhelmed and everything feels like a struggle, even the smallest tasks most people do everyday without thinking twice about it.
i have almost only had bad experiences with doctors and other medical professionals like physiotherapists, which has given me a lot of extra anxiety on top of my already pretty bad social anxiety. i really struggle to make appointments and even more so to go to them, and when i bring myself to do so i really struggle to express myself and explain how i feel and how i want them to help me. i almost always get shut down and offered no actual help with any of my problems. i just don't know what to do anymore.
if anyone has any advice i'd really appreciate it. i know that i can't give up because my life right now without accommodations is too miserable, but i also don't know how to move forward.
sorry if this was hard to understand. i really tried my best to explain but im having a bit of a hard time expressing myself right now due to feeling worse than usual.
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trying to remain cognizant of the fact that there is no amount of vetting processes to 100% without fail keep losers from out of your life, but more importantly that it isnt my fault that i do inevitably end up involved with them
i cant know who people are until i know who people are! it just is what it is. just gotta move accordingly once they make themselves known. i guess its tiring getting your hopes up. like..
its not fair to others to try and connect with them without putting your whole heart in it, but when you take it seriously, it only hurts that much more when it inevitably flops, but if you dont try then you only guarantee that youll never have what it is you seek
its so hard to fight off the question of "why bother" while trying to take human interaction in stride. the complete lack of control of how relationships go regardless of which perspective you have is maddening. you can do everything right and still be reacted to as though you did everything wrong. and theres no recourse! it just is what it is. like there's no justice or rectification. like that happens and thats just it; youre just expected to get over it and keep moving forward, regardless of how gutted you are. like nobody cares but you, because you're the only other party thats emotionally invested.
the more you try, the lonelier you get, and the more you inevitably suffer. "when does it end?' i scream into the void for the thousandth time. the void stares back; arms out, silently beckoning me towards its embrace
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I have to figure out a way of getting more interest in my oc stuff without needing to draw as much because I dont have the time or energy to draw as much as I would like, which includes a lot of concepts and/or scenes that are in my head only but can't commit to drawing, but it feels like most people are only interested in visual stuff as opposed to just written stuff (and for good reason, visuals are flashy and all!) It just makes me a little sad that I cant draw and share everything Id like to show, and what I can do most is talk about it, but that barely ever gets responses unfortunately
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My f/o making a soft comfy spot for me on the floor in the living room for me to pass out onto is self care.
Imagining my f/o coming with me to the bathroom so I can squeeze their hand when I'm in pain and then reassuring me and not being grossed out is self care.
My f/o reminding me to drink a lot of water so it flushes out those nasty little bacterias is self care.
My f/o helping and reminding me to take my antibiotics in the morning and before bed is self care.
My f/o comforting and reassuring me when I'm having a break down because I'm so sick of this constant state of my body shutting down or having something wrong with it is self care...
I just want to be better.. :c
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