u/That-Ladder-4523

at 25, i've dealt with lupus symptoms my entire life. and my family has always labled me as "dramatic." sun sensitivity, heat sensitivity, fatigue, butterfly rash, etc., you name it. to sum up the past 2-3 years of my life, everything has gotten worse and i am debilitated more often than not. i had to quit my job abroad and move back in with my parents. grateful as i am, they still think i am overreacting and being a tad dramatic (depsite the fact my life has irrevocably changed) and they do not care to learn how it impacts me and my life moving forward.

cancer is familiar to my family, and since beginning to break the news of my diagnosis, i am not only hit with "you look fine," but "well it isn't cancer," too. normally, i'd be able to shoo away my family's opinions, but now a close friend of nearly ten years is demonstrating similar behavior. there are few things worse than being dismissed by someone who you care about and whose opinions you value, especially when those opinions are about how they do not believe the gravity of your new life. i've been saying this frequently lately, but i really just feel locked out of my body. being a good friend is hard when you are rationing what little energy you have.

i'm wondering how other's have dealt with dismissial from loved ones, and if campaigning to educate has done anything. whether it's worked or not, i'm grateful for the solidarity in advance.

i've seen other users talk about this in the past, but i wanted to bring it up again and see how folks handle creativity. i (25m) was diagnosed recently and in a few hours im heading to the eye doctor for an exam so i can get cleared to start plaquenil. i know i am moving in the right direction, but there is still the feeling that i am faking everything and my rheum was wrong and im actually fine and i should still be able to do what i always used to (note: who else has imposter syndrome for their lupus?). my hobbies of choice before testing and diagnosis were runnning and bouldering, but i had to put them on pause for obvious reasons, so i took up knitting for the first time in a few years (this is one of many times in my adult life i am grateful to have attended a waldorf school), but something i am really struggling with is writing.

since i was a kid i've loved creative writing. it's always been the one thing i've always carried with me. even if it's bad and no one saw or read it, i loved just the act of writing. my journey with lupus has been lightning fast (symptoms since childhood but no doctor took me seriously until last august) and i wrote through most of the early days, just to be silly and creative and let my brain smush itself around while i dealt with a never ending list of new limitations. i dont know if it's because my depression has increased, because my flares are worsening, because my brain fog is bad, or what. i don't feel i have writer's block, i just can't bring myself to write anymore. i still knit, though it doesn't bring much joy anymore and it's begun to feel like a chore. i feel like the nature of lupus is constant war with the self and in true lupus fashion i am at war with myself and my ability to make things. my fatigue has reached new heights in recent weeks, which definitely impacts all acts of creation, and my body is just sore and aches and is weak. i only work part time, but work has been getting more challenging (thankfully i work at a doctor's office and the staff is understanding), but there is more grief tucked away in there. i was an english teacher in taiwan for a year and truly felt i was living the life i wanted to live. i was set to stay another year but decided to come home for a year and settle my health. i was asked to come back, had an interview last month, and was promptly informed my health wasn't strong enough to return as a teacher.

this post has started to meander quite a bit. what i mean to say is this: i am struggling to keep the creativity i had before diagnosis and am no longer living the life i want to live. i've had symptoms since childhood but without a name to unify them i was in ignorant bliss. it has never impacted my ability to MAKE things. there's no one answer, i'm sure it's a nasty cocktail of symptoms, diagnosis, depression, living situation, and physical/mental limitations. mostly i would just like to hear about similar experiences or how others managed similar situations. if there are any former waldorf students or teachers out there, i'm finding stockmar beeswax is just as therapeutic now as it was when i was six.