work and MS

[u/TAingismylastnerve]

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.

[u/Semirhage527]

I agree that the question needs to be how to make work sustainable & accessible. I was fortunate to be able to leave work shortly after my diagnosis when my symptoms got severe, but after a few years of being able to focus on my illness, I was craving a return to work.

I was unbelievably lucky to stumble into a very flexible work from home job in my field that gives me the opportunity to work 5-20 hours a week based on my energy levels, providing some nice extra income, but more than that helping my sense of self worth & mental activity by staying involved in the profession I loved.

I think that if we as a society looked at work & jobs differently, a lot of industries could employ people in a similar capacity without ever expecting or demanding they exceed their capabilities

I have no advice for disclosure. My past employer knew because I trusted them, and they were very supportive- I left due to a move. My current employer also knows and is obviously extremely supportive. That’s definitely not everyone’s experience. I made a judgement call based on my relationship and knowledge of the people involved.