@sritawk

Last reply

sritawk

Hi, from Scotland

I was pointed towards shift.ms as a great community and resource for MS. I’ve been newly diagnosed, and will be on Ocrevus once I’ve had my vaccinations. I stay near-ish Edinburgh, but will at least be having my infusions at there. Bit of a rubbish hand we’ve been dealt, haven’t we? Some days I’m fine, I barely think about my MS, but other days I well up at work (thank goodness for working from home, and the mute/camera off options on Google Hangouts). I broke down often in the early days and even stopped looking at two storey houses because I was so scared my mobility would deteriorate soon. Then I did some reading and was able to calm down. Thankfully modern medicine has meant that things are a lot better now than they were 20 years ago. But the uncertainty is still so daunting. I’m still weighing up the arguments for and against telling my workplace. What did you do, and what was the decision making behind whether to tell or not tell your employer? Thanks folks 😊

jamoranto

@jamoranto

Hello @sritawk In my opinion no need to share in a perfect world we could but it ain’t perfect at all. I made the mistake in letting my employer know about my MS and lasted a year there then let go. It did force me to start my own company. Best Jorge

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Dx24012021

@Dx24012021

This is your private health information and you do not need to disclose anything. The only caveat is if your disease is active and you need an extended amount of time off or require workplace modifications when (and if) you resume work in the physical realm. Then you might need to discuss things with your employer. Other people might suggest otherwise but if your diagnosis is not interfering with your ability to do your job then I wouldn't rush to tell anyone. I have been newly diagnosed too and just had my first infusion of Ocrevus on the 5th. Hang in there! We're all here to support you so don't be a stranger :)

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Adriftinthewood

@Adriftinthewood

Hi @sritawk, Whether you tell your employer or not is really down to you and whether you feel it will impact on your abilities to work. In the UK, if you have a disability (MS) you have certain legal protections in employment and you can access other services to help you stay in work (such as Access to Work). Neither the legal protections or the services are a panacea but they're designed to stop an employer from sacking you just because you're disabled. Hence, in terms of whether an employer is complying with the law, it can become a legal argument whether an employee should inform an employer about their disability but it still remains your choice. Personally speaking, I've never had an issue with telling an employer (they usually ask for a medical before I start) and the only issue was with one pre-diagnosis when neither of us knew what was going on. For me, I usually tell my employer for two main reasons. One is to help me manage my MS. My colleagues usually spot symptoms before I do [cognitive related issues I'm not always aware of, such as slurred speech etc]. The second is just to raise awareness of MS and disability. Attitudes are better now but when I was first diagnosed (25+ years ago) they were pretty poor. At the end of the day it comes down to you and how you feel about it. It can help to mention it (especially if you need extended time off) but it's also a very personal matter and you have no need to disclose it. I guess this doesn't really answer your question either way but, as others have said, if you need to talk, rant etc etc, there's quite a lot of support on here so feel to post or message whenever you have a query etc. Let us know how you get on, or whether you need any more information (especially about the legal stuff). Take care xx

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Vixen

@Vixen

Hello and welcome @sritawk. on't feel pressured into telling your employer, but equally there are benefits. Mine arranged for me to have an Occupational Health assessment which was great and put into writing reasonable adjustments which my employer would need to consider. Also made WFH easier during Covid, with no pressure to go back. The thing about the two-storey house; with or without mobility issues; if you are diagnosed, one school of thought is why make life any more difficult than it has to be with stairs? Great that you're starting with Ocrevus, that's only been available for a couple of years. There are lots of previous posts on here about being newly diagnosed if you search in the magnifying glass. Also, the Dr Aaron Boster clips on YouTube are an excellent source of information :-)

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watsoncraig

@watsoncraig

Hi @sritawk we have a small unaffiliated group over here in Falkirk who pre plague met monthly for a blether and now have moved online where we get folks from all over the U.K. and across the pond. The next chat (Wobble) is this Sunday at 11am if it interests you, I have posted the details on here. You would be more than welcome, it does help to Falk to others who experience similar issues

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sritawk

@sritawk

Thank you everyone for such a warm welcome! You've all given me lots more to think about

katherinecarr

@katherinecarr

Hi @sritawk! I am 32 and was diagnosed 5 years ago now, I did tell my employers so they are pre warned should I begin to have difficulties. I am just about to buy a two story house - do it!

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xyzed

@xyzed

Hi @sritawk, I was diagnosed 5 years ago and am on Tysabri. I have told my employers since diagnoses because I am on Tysabri and need the time off once a month to attend the infusions. They have been very supportive each time not just in terms of my infusions but also in terms of flexible working, working from home when I need to etc. I think it just depends on who your employers are and if you feel comfortable with them knowing. Like others have said, it is your private health information and you don't need to tell them anything if you don't feel comfortable - but if you think it might be something helpful to make work life easier, then I would highly recommend.

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Allinmyhead

@Allinmyhead

Hello 👋 It's your choice to let work know. I told my manager and he left it to me whether he would tell H.R. which I did. I then able to reduce my working hours and wouldn't be required to make up time off for MS related appointments . I was due to start Ocrevus last year but Neuro consultant decided to postpone until after Covid. I started Copaxone last month and so far all okay. When I was first diagnosed I thought about it constantly but now only if I have any problems which luckily isn't very often at the moment.

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Dx24012021

@Dx24012021

I came across this and hope you find it helpful- Ardra is my favorite MS blogger and I read through most of her material when I got diagnosed in January. https://www.healthline.com/health/multiple-sclerosis/ask-ardra-anything-when-should-i-disclose-my-ms-diagnosis-at-work

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sritawk

@sritawk

@Dx24012021 thank you, that article was really useful to see both arguments

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Dan1723

@Dan1723

Hi, I told my work pretty much straight away as I'm a hgv driver. They've been good so far as I'm on furlough and they've said there's no rush to come back. Also they have already offered me a job elsewhere in the company if I can't do my job.

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NumptyDumpty

@NumptyDumpty

Welcome to the club. Another nearish edinburgh mser here. I disclosed to my line manager and HR as soon as I was diagnosed, and disclosed to everyone else at work at the point it was obvious something wasnt right (limping round the office, falling over my own feet), employer and colleagues have been great. Was wroking from home a couple of days a week pre covid, work got my home office set up and got a physio assesment of it done as well. Currently working 4 days a week on a flexible basis (so I can change hours/days to suit). Likely to reduce hours further in future. So for me disclosing has been.very positive. But I guess it does depend on the employer.

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