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Telling work I have MS

Hi everyone,

I started a new job 3 months ago and am really undecided whether to tell them I have MS. I was diagnosed a year ago and have only have one episode since my diagnosis but over the weekend I had continuous hot flushes and couldn’t sleep at all with at the same time having bad fatigue. I’m not one to jump to conclusions and always blame every time I feel a bit iffy on my MS but this weekend did feel different. It just worried me as I really don’t know what I would have done if yesterday had not been a bank holiday and I had to go into work as I was completely useless yesterday and spent the whole day lying on the sofa.

As I said, I only started the job 3 months ago but today I have my 3 month review with my boss. I was just wondering if anyone had advice or their own story about telling their employer about their MS or any advice whether I should or not? Would really appreciate it as I have no idea if it is a good idea or not. Part of me feels it would be good to be honest as I am already finding it hard to cover up hospital appointments and am starting Tefidera soon so if I get side effects not sure how I will explain them too but then I also do not want to be stigmatised for having MS. I am only 23, am still absolutely fine 9 times out of 10 and am fully capable of still working.

Please help, so undecided what to do!

Hi Smurphy​,

My circumstances are different, so can’t say I’m an expert as haven’t been in this particular situation. I don’t think you have any legal obligation to say you have MS and you do say that 9/10 days you are fine. You don’t say what type of work you do, but if you have received a diagnosis of MS at 23, then I’m guessing that you do have noticeable symptoms.

So I guess you have to consider the future. Are you intending staying in this job, are your symptoms likely to impact on your current job. If so, you may feel that it is worthwhile mentioning your MS, even if this is only to a select 1 or few of the management etc. You seem to have thought about the possibility that you may need time off at short notice, so it does seem sensible to tell people. They can’t fire you for having MS and would be obliged under various disability/ discrimination laws to actually try and accommodate your needs if your symptoms got worse, so in that case it makes sense to tell them.

you mention you don’t want to be stigmatised. I understand, but who do you think would do this, and I’m afraid a lot of dealing with MS is mental attitude, and people are often more understanding than we think.

Xx

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Disabilityrightsuk.org have a factsheet on this issue. Might be worth reading. As they say your employer cant make any adjustments unless they know.

Have a read and see what you think.

Thanks for all your replies, it really has helped me.

I work in an office job so luckily don’t have to exert myself really at all. The boss is having a three month review with me and that is why I thought it would be a good opportunity to bring it up just to get it out in the open and so not have to deal with the stress of having to come clean when i’m actually having an episode, if that makes sense.

But I also am so undecided about this, and whether I’m just being silly and should just wait until something does happen to me? I’m just finding it hard to cover up reasons for why I’m going to quite a lot of hospital appointments. I also am worried as I am starting medication soon and so worried about the side effects showing up.

Oh gosh! My boss just came to me and we are having our chat at 1.30pm, I have no idea what to do!!!

hi smurphy

i hope your chat with your boss went well.

please let us know.

carole x

I hope that it went well and that you feel comfortable with whatever you decided to do!

Alison

Hi Smurfy,

I was only diagnosed in March, am 39 years old and have worked where I am for 16 years. So my situation is slightly different but I told my bosses when I was diagnosed. I hadn’t had any sick time with my symptoms but was stressed so had told them I was being investigated. Not only did I tell my boss but I told everyone I work with, I wanted it to come from me rather than rumours. I also have a physical job on my feet as a nurse so felt people I work with needed to know.

I do not regret it at all. I have been overwhelmed by support. My bosses have suggested I get my MS nurse to come and see them to explain it all to them. I know I am lucky and I have know these people a very long time.

I hope whatever you decided your review went ok.

Snowqueen x

Good afternoon

Once I was diagnosed with RRMS, I told my place of work. I have been fortunate enough to have an understanding management team or its a case of them knowing that they have had to abide by the disability rules. My manager is very supportive and fights my corner if and when required.

Regards

Ang

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Hi all,

Thank you all so much for your advice and support, really does mean a lot and to know that there are others out there who have faced something like this with MS.

Had the meeting with my boss and to tell you the truth I couldn’t do it, I was just too scared. I am now kicking myself reading your replies and seeing how it seems to have taken a load off your mind from being open about your MS but for I was just too worried about what response I would get.

I sadly think that the thing that scared me the most was my parents reaction when I said I wanted to tell work. They, I’m afraid, were not exactly supportive and told me I should not give any reason for work to doubt my ability and that if I told them it would only limit me in my position in the long run and that not everyone is understanding and basically I would be judged. They said I should wait till I have my next episode and then if I have to tell them tell them then which only stresses me out more.

Now I don’t know what to do as the moment has passed with my boss. It was just a review and she basically said that she was happy with my work and that she wanted to give me more responsibility and throw me into the deep end a bit more. I guess this exciting proposition from her tied in with what my parents said (I’m having a bit of space from them now as it did really hurt what they said…) meant I bottled it yesterday. Need to find the courage somewhere.

Thanks again for your help, soso sorry for my rambling! You are all so kind to take the time to help me.

Hi Smurf,

It sounds like the chat with the boss went well, more responsibility is amazing well done. I wouldn’t worry as you said you have only been there 3/12 so don’t worry about not telling yet. You will know when the time feels right, trust your gut instincts. It doesn’t hurt for them to feel how valuable you are to the team first. Particularly if you are well at the mo. However as other say you are instantly protected by the disability equality act once they know. Do you have a 12mth review maybe that’s the time?

Snowqueen x

There aren’t any rights and wrongs here. You made a perfectly reasonable choice, so don’t waste energy digging the drains up on it now.

Most things in life are subject to review, including this one. When the time is right for you to share with your boss, you’ll do it. . In the meantime, it’s no bad thing to have a satisfactory 3-month review report on your file - your parents aren’t daft!

I hope that the new job continues to develop and go well for you.

Alison

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Hi smurphy4 , hope Your well: I read your post and I’m in exactly the same situation. I havnt told any one I work with and to be honest I don’t intend to. Not because I’m ashamed ( I am ashamed and embarrassed but that’s not the reason ) but I hate hate hate that once you disclose the information you can’t be tired or stressed anymore like normal people. I want to be able to moan every day that im hot or tired or achy - like every one else does (from the hard work not the ms) without being so worried people will think “by she’s playing on it abit” or sympathising " Ahh is your Ms playing up ?" I just wanna scream “no my Ms isn’t playing up iv just worked as hard as all of you im allowed to be nackered too” and that’s family and friends so no way imposing that to my work life. I’m aware of my abilities tho and if the time comes im struggling or my not be able to do my job well then I will tell them x