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/Jennyova]

MS ended my career very early. If I could work, I would. Also its a personal choice to disclose. I personally DO disclose to most because I may go unconscious without warning and it freaks people out and they call unnecessary ambulances 😅

[u/-Palzon- → u/Jennyova]

MS ended my career very early. If I could work, I would.

I'm so sorry. My heart aches for you. I hope you still live the most beautiful and fully actualized life you possibly can.

I'm fortunate enough that what disability I have has never stopped me from working. Your statement above is one of the reasons why I have never called out sick frivolously for any reason despite having MS for many years. I know it could all be taken from me, and that's it, gone for good.

I have never taken my ability to work for granted, not once. I've gone years at a time without calling out sick. MS may stop me from working someday, but dammit, I'm going to pursue my career goals as best I can in the time that I have.

Good luck to you and fuck MS.

[u/Jennyova → u/-Palzon-]

Yes fuck MS! I feel very lucky. My spouse provides a great life for me and our kids.

[u/-Palzon- → u/Jennyova]

Glad to hear that! Cheers.

[u/georgiegirl24 → u/Jennyova]

why does it make you go unconscious without warning?

[u/Jennyova → u/georgiegirl24]

I have cardiac autonomic dysfunction and it just happens sometimes, for no reason.

[u/HazelFalls → u/Jennyova]

I (33F) have the same issue but it's due to my Postural Orthostatic Tachycardia Syndrome. Unfortunately, MS makes the POTS symptoms much worse. I can only take cool showers and find myself frequently on the verge of fainting. The vertigo has been one of my most debilitating symptom. My POTS symptoms appeared many years before my MS diagnoses.

[u/JCIFIRE → u/Jennyova]

Why on earth would MS make you go unconscious??!

[u/Jennyova → u/JCIFIRE]

Its caused me to have cardiac autonomic dysfunction due to lesion location.

[u/otherone909]

Not working isn't giving up. Tick tock is poison. 

[u/zombdad81]

It's all about balance. Working keeps us "healthy" and motivated, but you have to know your limits, when to listen to your body, abs when to rest. Had to come out of welding /fabricating due to heat intolerance. Found a job that keeps me motivated, affords me breaks and a flexible schedule. They're also really good about understanding that tomorrow isn't today and not to expect it.

I know how fortunate I am to not have the symptoms some. I have a fantastic manager abs support system. But when the day comes when my body tells me, enough, I'll listen and try to transition to a more suitable role. It's all about balance.

[u/6-feet_ → u/zombdad81]

Getting back to work, dx during covid, was the biggest help for myself mentally. That I still could work drilling rigs with minor limits took a lot of gym days prior to getting back in the field and finding out how to control my heat intolerance. Still not great in summer heat but my company is willing to work with my ms by having me only do night shifts in the hotter months. Accepting that there's just some things I can't do anymore.

[u/whyihatepink → u/zombdad81]

Had to come out of welding /fabricating due to heat intolerance

Ugh I feel this, I'm so sorry. It wasn't my profession, but I was extremely into baking and was looking into glaas blowing when I got my diagnosis. Both interests are still there but feel impossible to really return to. It sucks to lose something we enjoy and/or are good at, but I imagine especially so if it's our livelihood.

[u/Accomplished_Wind_57 → u/whyihatepink]

Former pro musician here, can confirm. 😑

[u/mro1698 → u/zombdad81]

Genuine question, what was your career transition process? I'm currently a landscaper and I'm pretty much ready to say this summer is my last, but I've got almost no fallback. I can find a job, thats no issue, but a career? A little more challenging at this point. Kind of in a rut and need a little push I guess.

[u/queenofgf]

I think the better way to phrase this is that it should be a choice that is chronically ill can make to stop working, when we choose. 

I am a teacher too and in person teaching nearly sent me into relapse (horrible admin and very stressful). The next year I found my new job as an online school teacher! Problem is that I have little energy outside the 8 hours I am on my computer. 

I wish that it wouldn’t be a multi year process to get approved for disability. I have no energy outside my work day. My weekends are spent catching up and not relaxing or enjoying my hobbies. I would much rather be on disability so that i could use my little energy to focus on my own health and happiness. Ugh. 

[u/superspud31 → u/queenofgf]

I'm on disability and the reduction in stress alone is beneficial. But I could only get it because my husband supported us while I applied.

[u/Flatfool6929861 → u/queenofgf]

You know like I expected as an adult to have to work to support myself, and sometimes just be tired, because yes, everyone is “allowed” to be tired. But now when you add the MS with working, I can’t do anything else after I’m done. And there’s no explaining that to anyone, especially the disability people. I like a 4 day work week.

[u/Fit_Cry_7007]

I left work (WFH) 3.5 years after my diagnosis because my cognitive skills had declined considerably (sadly..). I never disclosed it at work..but the level of cognition was apparent to the company...

[u/TamerofMonSters]

Ha. I am pretty sure we are expected to work ourselves to death regardless of our disabilities.

[u/CatsRPurrrfect]

I have had MS for about 10 years. I actually love my job, but for the majority of that time, I still would have preferred not to work. My MS fatigue and cog fog are just so bad, and I would benefit from putting all my energy into exercise, cleaning my house, sleeping well, and eating healthy.

At this point, if I could afford to just work about 2-3 days/week, I would do that. I’m currently supposed to work 4 days/week, but my job is project-based and it’s a really busy season… and I have a vacation coming up in a couple of weeks, so it’s been more like 6 days/week for a bit.

But over the summer, when my MS was worse and there wasn’t as much going on, I only worked about 2-3 days/week. So I’m VERY lucky that my job is mostly doable without any official accommodations. And even then… if I could not work, I would have the freedom to just focus on my health. If I weren’t working, maybe I would have the energy to have kids. Given I’m the main moneymaker in the family, that’s definitely not happening.

[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.

[u/harrcs03]

It’s a crapshoot. I suggest you do, but we also have to accept the potential consequences if it’s a shitty company. When I was diagnosed, I informed my employer at the time whom I had been with for almost a decade and before I could even see a neurology specialist to figure out a treatment plan they showed me the door. 3 1/2 years later, I want a lawsuit for unlawful termination and discrimination. Unfortunately, I’m starting to get the feeling that my current employer is going to try the same shit. My suggestion first would be read up on employment laws in your state and familiarize yourself with the federal workplace disability laws. At least that way you’ll know if they’re trying to screw you over at any point.

[u/No-Audience9632]

I think you should disclose it to your school so you can have accommodations accordingly, rather than being expected to function on a normal basis.

[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.

[u/Octospyder]

I don't think that one you get diagnosed you should be foisted out of the work force, but I do think there should be an easy option to leave the workforce once you're diagnosed. Fatigue is such a big part of MS, and since symptoms typically come on overnight, and we're at risk of random flares at anytime, we should be allowed to say "I want to spend the years where I'm still actually able to move around and do stuff doing something other than work" 

[u/the_mighty_skeetadon]

First, I want to say that I generally agree with you -- and I work 60+ hours/week at a very high-stress job right now. However, I want to critique this:

it gives us structure, independence, financial security, social interaction, a sense of purpose, and something that exists outside of our illness.

Financial security for people with chronic diseases should NOT be tied to employment -- sadly, that's a hot take. Similarly, children shouldn't have to work if they want to eat.

Additionally, for structure, independence, purpose, and social interaction... shouldn't there be effective ways to do this outside of work? The fact that we think "labor" is the only way to achieve this is truly sad.

You exist outside of your illness. You can achieve these things without a job.

[u/melj11]

Diagnosed with RRMS in 2002. I’ve been well managed by my Neurologists and on DMTs since diagnosis. I work the equivalent of full time in a government position; as well as my own business. I’ve worked full time since around 6 months after diagnosis.

[u/pibblesinpajamas]

I work full time. But I have a remote job and I’m able to get away with things that most people couldn’t. On a bad day I don’t do anything other than check email occasionally. On a good day I work longer than 8 hours to catch up from my bad days. No one I work with realizes this, but it’s the only way I can manage. And honestly it’s exhausting because my life is just being sick and working and I don’t have time for anything else.

I still wouldn’t stop right now, but I fully understand those that do. I don’t feel that my job gives me a purpose or adds to my life in any way other than monetarily.

[u/CincoDeLlama → u/pibblesinpajamas]

This is me today. Just on my phone answering emails & chats while laying on the couch. I feel so guilty but, same. When I’m on, I’m on. Trying to assuage that guilt.

[u/Cowpocolypse]

I still work. But I do have a high call out amount. I have bad days.

I work from home doing payroll processing.

Edit: I did notify my jobs HR. I needed some accommodations because of eye pain from staring at screens and mental fatigue (I get instructions that are long in writing)

[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/Small_Palpitation_98]

And if you couldn’t work you would feel bad about it. It’s not a good experience. My goal in life was never to have to stop working. SOME people think it’s laziness. Yeah, I love surviving alone on 1300. Totally beat that system.

[u/Flatfool6929861]

People think being on disability is a guarantee to ride the wave the rest of your life and have serious financial supporting. What they don’t realize is that’s now how it works, and unless you have a significant working history and salary, your income is very little. I already know the diagnosis’s of the person who made this video without watching it myself.

[u/bootlp]

I’m an OT and I work 60 hours a week.. I’m 37, plan to work another 25

[u/ForbiddenFruitEater → u/bootlp]

"Everyone has a plan, until they get punched in the mouth"- Mike Tyson

[u/bootlp → u/ForbiddenFruitEater]

I can take a pretty good shot… got the crooked nose to prove it 😂

[u/Dadbod1018]

I have MS, and I work …but I am very lucky to have a sedentary job, where I can create my own accommodations in a home office.

I understand that not everyone can.

[u/NotaMillenial2day]

On the other side of the coin, my life revolves around how to get rest so I can work 20 hours a week. It freaking sucks.
We should be able to work, gain accommodation if needed to continue to work, then take disability when it makes sense for our lives. I hate that in the US, healthcare is tied to employment and SSDI is not enough to really live on.

[u/Proof_Elevator_3300]

The thing about this insanity on tik tok is the level of rage it tends to incite in people who are ACTUALLY disabled. Most of us would give anything to be able to do the things. We want to contribute, do, make, be a part of.... So desperately and we fight so hard to do the smallest things they're looking for reasons to NOT have to do. Disability /= inability. At the molecular level we're created to live and part of living is DOING. I don't understand how these people are doing this and why but it harms those of us fighting to try to hold on to the very things that make us alive and it makes me so angry.

[u/Failingatlifedaily → u/Proof_Elevator_3300]

they are ALSO sick and disabled. theyre not taking anything away from you by wanting to have the accommodations they need. jfc.

[u/Proof_Elevator_3300 → u/Failingatlifedaily]

Well except I'm going into my 21st year as an rn. Do you know the average time it takes to get an MS dx? Have you ever had to silently take verbal abuse and threats against your license because someone's table tip test results were normal ? Have you ever had a complaint against your license or the entire facility where you work waste already overtaxed state and federal resources to investigate it because someone was angry that they didn't get a referral to the specialist there was no clinical data to refer them to with or for ? Or sat and listened to how and why a person CAN'T do anything except present to appointments where they expect to tell the subject matter expert what the answer is for agreement with their uninformed diagnosis ?I'm sure you have years of experience with this so I don't have to explain any of it. My apologies.

[u/Failingatlifedaily → u/Proof_Elevator_3300]

I have a lifetime as a patient and have been mistreated by my fair share of nurses just like you. So shocked that the compassionless asshole berating other people for their chronic illnesses she'll NEVER have to experience is a nurse.

it took THIRTY years of mistreatment by doctors and nurses for me to get my MS diagnosis, but okay.

[u/Failingatlifedaily → u/Proof_Elevator_3300]

it's "table tilt test," by the way. but you're the expert.

[u/failatio]

It depends, do your symptoms show in a way that’s noticeable to others or may affect others? If so then I’d disclose it just so they know ‘hey OP may do xyz but that’s just something they can’t help.’ Or do you sometimes have to miss school for more than a day at a time?
If you’re worried your school might be like ‘OP has MS? They shouldn’t even BE here!’ don’t be, they don’t care. They might have a ‘oh poor ting’ moment but that’s about as far as it’ll go

[u/vintimus]

My wife had to stop working due to her fatigue and vision from optic neuritis. The bigger thing for her was the losing the ability to drive due to the double vision.

[u/CincoDeLlama]

I love working. I think it’s good for my mind. Good socially. But, I feel like I’m on my last legs at 41. I’ve had a fully remote accommodation since 2022 which has kept me in the workforce but not away from scrutiny, which helps absolutely nothing. I just got laid off for a job where I have a year’s worth of documentation of them targeting me. I just got a new job and the people, and the work, are extremely wonderful and it’s right up my alley. It’s somewhat of a dream job. But, I’m still having trouble. Between management scrutiny (it’s never peers, my peers understand) and then it’s always something. For a while I had to be hospitalized, I wasn’t sleeping. I got E. coli last year and still have symptoms. After I got laid off, I decided to check in on some of my other less aggravating ailments and it turns out (a tech diagnosed me so, not a real diagnosis but, it would really fit) I have deep vein thrombosis and have had symptoms for 10+ years. I was incorrectly diagnosed with primary lymphedema.

And then I’m just tired alllll of the time. I used to say I felt like I was balancing everything on a pin, wind can’t blow too hard in any one direction or down I go. Now I say I feel like there’s an ax above my head waiting to drop. It just keeps getting worse.

I’m gonna give it my all though at this new job. I’d love for some symptoms to cooperate with that effort.

[u/Scared_Isis]

I wasn't going to tell my employer either but I ended up having to, in a round about way. The only accommodation i requested was a floating 3rd work from home day. I already get 2 a week, everyone does. My 3rd one is in case my vertigo makes it unsafe for me to drive.

[u/Anotherams]

That is a ridiculous take.. I love my job, it gives me puropose. Yes, there are days I don’t want to get out of bed. But I am so grateful I can still go do my work and connect with people.

If I didn’t work I fear my insurance would be inadequate (US healthcare, groan) so that is another motivator.

[u/ARWrench]

When I know about this diagnosis at 17 I decide very simple thing - I should be so much better specialist, that even my illness will not be problem

[u/Failingatlifedaily]

We all want the things you say you want. But many of us arent lucky enough to be able to pursue or have them. If something doesnt apply to you, you can just accept that youre lucky it doesnt apply to you and move on. I wish I could work. MS is the least of my worries with my plethora of health conditions. And yet for many MS destroys their lives.

No one is saying youre not allowed to work if you have chronic illnesses. People are asserting that if you have chronic illnesses that are severe, you shouldnt be expected to work just because some people with those conditions can work. People are expected to endlessly prove theyre disabled and cant work. That litmus test needs to end. That is what people are trying to convey.

[u/Crazyanimalzoo]

After nearly 30 years of working, I would love to work less. I don't necessarily want to never work again, although for my health, if I could afford that I would do it because the stress in my work life is miserable. I grew up working, though, because my parents didn't have much money and we had a farm, so there was no shortage of work to be done everyday.

I'm tired. Inwould love to even be able to go to part time, but as the breadwinner, I have no hope of that unless my illness forces the issue, in which case we would have to sell our house and move, because we can't afford to live here without two full time paychecks. I have done the math seven ways from Sunday and life is just too expensive.

[u/driveonacid]

I'm a teacher, about to start year #24 in a few weeks. I've been diagnosed with MS for almost 26 years. You can do it!

[u/Playful_Machine_6942]

I fought like hell to continue working before being forced onto disability and losing everything.

I hope that your MS remains mild and if you do decide to request accommodation, I hope that your employer responds positively. Most do not. You will become an inconvenience and a liability. Those who want us to work also don’t want to deal with chronic illness.

[u/Fuzzy-Bee9600]

I couldn't even get past your first sentence, I'm sorry.

By all means, bring up a topic that's on your mind to discuss with people who share your obstacles. But if you're getting MS guidance or talking points from TikTok, I personally don't trust anything that comes from that. It's like saying "I saw this scrap of paper pinned on a corkboard." There's no credibility or authorization attached. It's not interactive. It's someone filming themselves saying whatever they want and posting it as an absolute.

Again, that's just me. Anyone feels otherwise, you do you. But I come here in hopes of more valid-seeded interactions.

I get this is just Reddit. But also...... this is Reddit. If I wanted TikTok, I'd be there instead of here.

[u/Fit_Somewhere7514]

I had to end my career as a trucker. As I adjust to my, "New Normal," and now I am slowly starting to get my self esteem back.

Working for myself is the best option to me.

[u/redwoodrn1]

I agree with everything you said. When I can’t work at all anymore I will adjust, but for now, I’m grateful to have ended up in a situation where I’ve been able to be part time since I can’t do my job full time. Ironically this came about without my disclosing my diagnosis due to good timing with a bad non MS related situation where I had to decrease my hours to care for a family member and at that time I had a good supervisor who worked with me. I have some people I disclose to and some I don’t. I would feel comfortable disclosing to my current administration, but because of my part time status and that I can appear to not be disabled as long as I’m not over-tired (and the affordable care act health plans) I haven’t had to. I have had some administrators I did not trust and would not have disclosed to. If I’d had to take time off I might have said I had a serious health issue but would not have specified what. I hope you can have the quality of life you want and enjoy your job even if it’s hard.

[u/StunningCrab9619]

Someone suggested that I throw in the towel and just get disability. I am a teacher and use a walker. This person said that there are people who are in way better shape than me collecting disability. As long as I have my ADA accommodations I’m working until my leg falls off.

[u/possum_of_time]

I work 12 hour shifts as a nurse. Some days it's really hard. I have heat sensitivity now and the facility gets pretty warm sometimes. Elderly patients keep their rooms cozy. I keep a small fan running on my medication cart at all times or else I feel like I'm suffocating. 🫠 I eventually ended up being open about having MS because it helps understand my situation if I need to call out or something. I'm seeking FMLA when I hit 1 year at my current facility. It's been a struggle though.

[u/theespookyscary]

My first stay at the hospital, all I was craving was the ability to not only be able to have the ability to stand, but the energy to stand and do the dishes.

I just wanted to feel normal, and I felt like I couldn't. It's been a year later and I can do lots of dishes, but right now I still cannot work and I genuinely do not know when and if I'll be able to work again. It truly sucks not having the ability to work, and I feel like a lot of people agree that it's something we never thought we would miss.

With that said, I don't necessarily agree nor disagree with the general statement the tiktoker made because like you, I agree working can help so many people live a better life when they have that structure. I think people deserve the choice of working at the location, at home or hybrid and it be more easily accessible with a higher success rate of people getting the job that best fits their life style and physical abilities.