hi anon who sent me a message recently, ik u asked me not to post ur ask but it is important to me that i respond to you ā¤ļø
ur message made me cry bc i am so sorry you have to go through that; i cannot imagine the sense of betrayal, injustice, and the sheer physical pain you have had to endure. but also the sheer indifference of the healthcare system; the bills, lack of communication or real care, feeling like you are your only true advocate, and the constant invalidation and minimization... i resonated with so much of what you said about the cyclic nature of chronic pain and the reality of living with your pain and condition- and often feeling like it itself is leading your life entirely.
i totally get what you mean about people in your life being so supportive but never truly being able to understand... because you feel so inherently othered by your physical limitations and pain. i also do not know another person in their 20s who has the condition i have or has had back surgery. and i faced some really weird ableist comments from a fucking professor in may so i felt incredibly invalidated and felt like such a burden. i literally had to leave work early yesterday and call in sick today bc of my back so! it's hard not to feel like your sense of self becomes your pain and condition. i feel so pathetic when i can't even do normal things like sit down or stand in place for too long.
i very much get that feeling of your life becoming like a series of decisions, i often feel like i'm bartering with my own body for more time, for more anything; for something more than laying in bed all day.
i feel alone a lot too. and i feel annoying complaining to other people. then i think others think if i am not actively voicing my pain then i am okay, which is also not true. it's just really hard to be a person when you're in constant pain. when i have really bad pain flare ups, i don't really feel like a person... you're so consumed by the pain and instinct to just get any sort of relief
anyway, i truly, sincerely hope that things get better for you; that you're able to find some sort of relief and management. you mentioned using my inbox as a diary and my response to you is also a diary entry too haha <3 but you're right, it is so cathartic to express these frustrations. your message really resonated with me when i saw it and i wanted to let you know i am here for you if you ever want to send another ask (or dm!) pls pls feel free <3 sending so much love - mandy
discoholicmusic
jacobvanloon
baratheonpilled
janainaart
blakekathryn