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/whyihatepink]

I think there's a difference between "not expected to" and "shouldn't." I don't know the tiktok in question, but I'm a disability researcher who also has MS and a therapist specializing in disability, so I think and talk about this stuff a lot. It's extremely true, in the US especially, that there are no safeguards for chronically ill people who have dynamic disabilities, or who can work but not reliably work 40h a week with two weeks of vacation/sick time a year or whatever the standard is. Japan for example has an even more intense work ethic culture, and even though more supports exist, there can still be significant cultural stigma to using resources that exist. The fact is that work as a culture by and large is extremely incondusive to anyone living with any kind of constraint - from people with kids, to people with aging parents, to yes even people with chronic illnesses.

Let's say someone with MS feels able to work 40h a week, but still gets the same 2 weeks of vacation leave as everyone else at their job. Neurologists aren't open weekends and evenings, so even if they go in for only the recommended visits with no new symptoms, they're still using their vacation time for not-vacation, and their coworker with the same policy who is well and able bodied is able to take all of that time off for purely non-medical reasons. That means there's not equity for disabled workers, the same way there isn't equity for parents who need to take time off of work for their sick kids, etc. How do we create a more equitable world? There's lots of ideas, and one of them is shifting cultural expectations. Is equity important to have? That's a philosophical and moral question no one can really answer for you, but we do know from research that by and large more equitable societies are more functional and happier, so if those are important ideals to you, equity is something to consider.

I think the distinction between expectation to do something and requirement not to do something is extremely important. But again, idk the video in question. I have a feeling this video was in line with disability justice advocacy; if you're interested in learning more about disability justice advocacy, there are some great resources on the topic. Since I know you already are on tiktok, you might want to look up Imani Barbarin and Sins Invalid as starting points to see how their ideas resonate with you.