u/TAingismylastnerve

work and MS

i saw a tiktok basically saying that if you have a chronic illness, you shouldn’t be expected to work, and honestly i disagree with that pretty heavily.
obviously, ms affects everyone differently. some people genuinely cannot work, and there absolutely should be accommodations, disability support, flexible working arrangements, etc. i would never judge someone for being unable to work because of their illness.
but i also don’t agree with the idea that having a chronic illness automatically means you shouldn’t work.
for some of us, working is actually important to our quality of life. it gives us structure, independence, financial security, social interaction, a sense of purpose, and something that exists outside of our illness. i don’t want my entire life to revolve around being sick.
i have ms, and i want to work. i want a career. i really want to be a teacher. i want my own money. i want a routine and coworkers and something to focus on besides my health. and i don’t think wanting that means i’m somehow ignoring my illness or pushing myself beyond my limits.
what makes this especially complicated for me is that i haven’t disclosed my diagnosis to my current employer, and i don’t plan to. when i was going through the process of getting diagnosed, i told my previous employer what was happening, and i ended up getting fired. now that i actually have a diagnosis, i genuinely don’t know how i’m supposed to feel about disclosing it at work again.
part of me feels like i shouldn’t have to disclose something so personal just to be taken seriously as an employee. another part of me wonders whether there will eventually be a situation where disclosing it would actually benefit me, especially if i need accommodations.
i think that’s why the whole “people with chronic illnesses shouldn’t work” conversation bothers me. i don’t want ms to decide whether i’m allowed to have a career. at the same time, i don’t think people should have to hide their illnesses because they’re afraid their employer will see them as less capable.
i think the conversation should be less about “should chronically ill people work?” and more about “how do we make work sustainable and accessible for people with chronic illnesses?”

anyway all that aside. do i disclose this to my school or not….?

edit: im on dmt (rituximab) and i work with middle schoolers and high schoolers which is technically better than primary when it comes to how often they get sick.

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u/TAingismylastnerve — 17 hours ago

cyberpunk

i started playing cyberpunk partly because i just wanted something to take my mind off things i can go into a fictional city and forget about real life for a few hours
and then i heard MS mentioned in the game 😭 i cannot even escape my own disease in a fictional dystopian future lmao

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u/TAingismylastnerve — 7 days ago

Finally have some answers

Sure! If you don’t want to get into the diagnostic gray area, here’s a cleaner update:
hi everyone. i made a post here about a year ago when i was 23 after having two episodes of optic neuritis with completely clear MRIs. i was so frustrated because i knew something was wrong but i had no answers. i wanted to come back and give an update because a lot has happened since then. not long after that post i lost my TA job due to the school finding out i went to neurology checkups which was really difficult. shortly after, i had my third episode of optic neuritis bc of devastated i felt bc i got fired. thankfully i recognized the symptoms early and got treated quickly, but it was heartbreaking to go through it again. since then i was resting and jobless for a few months then i’ve started working as a teacher, which has been a huge change. i absolutely love my students, but balancing a new career while dealing with my health has been challenging. over the past year i’ve had more MRIs, more blood work, and a spinal tap. after putting everything together, i was diagnosed with multiple sclerosis. i’m now about to start rituximab as my first disease-modifying treatment. i’m honestly feeling a mix of relief and fear. relief because i finally have an answer after feeling like i was in limbo for so long, and fear because starting treatment makes everything feel very real. i remember posting under the undiagnosed thread because i felt scared, confused, and honestly a little dismissed. if anyone reading this is dealing with optic neuritis, normal scans, or feels like they have to keep fighting to be heard, don’t give up. keep advocating for yourself. sometimes the answers take much longer than we expect. even though i mostly lurked, this community made me feel so much less alone during one of the hardest years of my life. i never thought i’d be back here with an answer, but here i am. ❤️

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u/TAingismylastnerve — 2 months ago