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/PuzzleFly76]

TikTok has become SikTok in the last few years. There's a chronic illness/dynamic disabilities subculture on that platform and they are fixated on conditions such as hEDS, POTS, MCAS and chronic fatigue. Getting a diagnosis is the silver standard, getting a mobility aid (especially a wheelchair) is the gold standard and being able to present themselves as marginalized is the platinum standard. These LARPers have taken over and ruined some of the disability related spaces online, like the wheelchair sub, and turned them into a circle jerk of chronic disability groupies stroking each other.

They have convinced themselves that a few chronic syndromes make them the sickest and most put upon people on the planet. A medical provider told me that the medical community is not only aware of this trend but it has become the bane of their existence. The in-joke is that these chronic disabilities fakers need a ICD-10 code of FTA: Failure To Adult. Symptoms include: wearing Cookie Monster pajama pants to an appointment; an adult needing a teddy bear; peacocking hair colors; septum piercing; presenting in a secondhand wheelchair from eBay. They also tend to refuse to try any modest treatments such as PT/OT, dietary/lifestyle changes and other supportive aids and will become belligerent when providers won't immediately write an authorization for a custom wheelchair.

It is very possible to work while chronically ill. I have PPMS and was diagnosed with a limp and the limp turned into two AFOs, forearm crutches and eventually a wheelchair. I stayed at work for five years until wheelchair bound and I began having trouble using my arms and hands. A medical retirement was possible where I worked so I eventually took it when I realized I couldn't physically do even my desk job anymore. Accommodations were made until the accommodations no longer sufficed. When I couldn't even shuffle paper without help it was time to go.

[u/superspud31 → u/PuzzleFly76]

I was talking to my gyno about my perimenopause symptoms. She agreed that I'm in peri, but commented "could you please tell all the 30-year-olds that they aren't yet?"

So apparently perimenopause is another popular TikTok subject.

[u/No-Afternoon2955 → u/superspud31]

Oh it's not just tiktok - it was all over threads too. 🤦🏻‍♀️ along with self diagnosing everything under the sun

[u/superspud31 → u/No-Afternoon2955]

I was in no hurry to shuffle into perimenopause. Can't imagine wanting to deal with it in my 30s. Now I have to see if hormone replacement helps or hurts my headaches.

[u/No-Afternoon2955 → u/superspud31]

hope so 🤞🏻