Last reply 1 month ago
Do my colleagues know I have MS

Hi everyone,

Worried that MS will affect my career prospects, perhaps unnecessarily, I’ve made the decision not to disclose my condition at work. But I fear that my symptoms give me away.

In a meeting with my manager a couple of months ago I noticed him looking at my hand, when I looked down it was shaking. Today, in a meeting that I chaired with a number of colleagues, including my manager, I twitched and he and another colleague saw it.

I’m pretty sure most others missed it, but this is the second time he’s clocked my symptoms in action. Perhaps he notices less than I think, or doesn’t know enough about MS to attribute what he’s observing, but I worry that the cat is out of the bag.

It feels like one of those situations where either everyone knows and is keeping the charade up, or no-one has a clue and I’m reading too much into things.

Do you think that the shakes and odd twitch are enough for people to suspect MS? For those who have disclosed at work, did any of your colleagues suspect before you disclosed? What did they notice.

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guinness
1 month ago

@beefree may I ask what is your occupation


peterfrancis
1 month ago

@beefree

The shakes and the twitching are more than enough for them to think there is something going on with you, that is of course if you are not reading too much in to it. How would they know it’s MS though?, for all you know they may think you have been drinking or taking drugs or they may think you have something going on but no idea what.

Why did you decide not to let them know?, surely it is better to declare than not, no?.


bernadette
1 month ago

agree with peterfrancis, IF they have noticed, they are unlikely to think its MS and more likely to think you have been on booze or drugs. How about mentioning ‘a health problem’ or a neurological problem? something vague rather than going into more detail, medical conditions are your business after all. just my initial thoughts


nutshell88
1 month ago

I worry about the same thing not just at work
I worry anyone i know in my life other than my family knows
I rather keep it to myself


andysshere
1 month ago

hi . i totally understand ,but they will probabily see something you don’t . they will probably start to keep asking if you are ok , especialy if you dont tell someone . people alway see a slight change even if you try to disguise it . so they will only think the worst .


d1zzy
1 month ago

I have had the same dilemma and have recently not been able to hide my clumsy walking. I agree with Bernadette and have started making references to ‘an annoying health issue’ (understatement of the year😤🤬). That’s taken a bit of pressure off for now, and reduced my stress at work. I think it’s important to look after yourself and work out your criteria for timing a disclosure. Work should be supportive but I know it doesn’t always happen like that. Good luck.


spunky
1 month ago

@beefree I wouldn’t mention anything unless it is preventing you from doing your job and you may need special accommodations. People shake and twitch for many reasons and it is not only ms related. I was off for 3 monthswith ON and I told people I had a health issue. With my eyes….that was it


bas76
1 month ago

I know just how you feel, I have been a contractor for 5 years now and was diagnosed 2 years ago. Since diagnosis I have worked in 3 different companies (all large blue chip). I too would prefer not to disclose as I just want to get on with my job and life. However in my last role Iwe had a surprise treasure hunt which meant we all participated (about 50 people walking around Canary Wharf) I was initially fine but then just got too fatigued. I decided to pull my manager to one side I say I wasn’t feeling well but also mentioned I had a health issue. He didn’t ask any questions and said to go he will just tell everyone I had an upset stomach. On return to work I didn’t see him for a week or so and decided to tell him. He was very surprised and understanding, and actually very open even spoke of his supporting of his mum whilst she was having chemotherapy for cancer. He never went official or mentioned to anyone else. It made me feel so much better at work. If you have a manager you feel you can have an off the record chat with then I would go for it. If not then I too wouldn’t feel comfortable mentioning it however by law your employer should support you. I don’t know if I will mention to my next employer but it does become a job within a job trying to keep up appearances. Do what you feel most comfortable with, it is unlikely they know and probably have been dismissive of the shaking I’m sure.


shona12
1 month ago

@beefree
To be honest for me I was just open and honest about it, I don’t have been ticks but the tiredness, memory and vertigo days are my biggest thing.
For me it actually got me out of a role I thought I would be in forever that I hated. I got offered a job which I was better suited for and what I really wanted to do with no direct reports so for me it was actually been a positive step. it was a sideways but got more money a job I like and prefer, and it also meant I could work a day from home to help me cope.
So to me there was no downside.
I suppose I am open and honest about it and people ask questions now and again, but to be honest if I tried to hide it I think I would feel 10 time worse as that is a stress that my body doesn’t need.
That’s my 10 pence worth I hope it helps.


watsoncraig
1 month ago

I too am a contractor, and got released from contract as it was assumed I would not go offshore again (contractor so no rights!) Since then I have went to 4 other companies and this last one is the best as they are very understanding (doesn’t hurt that I have previously worked for them overseas).

Very open about this, and whilst they were less than sensitive, the company I was doing work for initially were wrong because I did. I have also in the last month proved to myself that I could still do the upside down in a helicopter thing, so anything is possible.

It is upto each and everyone of us to decide wether we declare it or not, but it may be worth letting someone in HR know, if you want to be silent about it.


glawsdan
1 month ago

Hello @beefree

The first day after being diagnosed, I had the idea to keep it to myself. But the second day, I went back to work and sent an email to all department heads saying I had just been diagnosed and that nothing need change, i’m The same person I was before. I explicitly said this should not be a secret and that they are free to share this information.

The act of sending this email lifted a weight from my shoulders which I felt unable to support at that time.

I think (though no one has told me) that I have gotten credit for the stiff-upper-lippishness about the whole thing and work has only improved in the two years post diagnosis.

I was of the view that if my work react badly to this sort of news, they are not the employer for me. The sooner I know this, the better.

All the best

Dan


lightning87
1 month ago

I doubt they think it is MS. There isn’t enough knowledge out there about MS for anyone to think it’s that. Before you were diagnosed, did you know twitching was a sign of MS?

You may just he second guessing. Can I ask why you haven’t disclosed? I have to my manager in case I need time off or anything but haven’t to others as don’t want the ‘oh I’m sorry’ chat.

I doubt they suspect MS, maybe think you just have anxiety perhaps or maybe they think nothing at all? X


beefree
1 month ago

Thanks all, for the interesting and helpful responses.

I feel the same as @nutshell88. For me, disclosing isn’t the best thing for now. This might change in the future but I’m confident in my choice. Whether or not to disclose, as @bas76 and @watsoncraig point out, is an individual choice. For me, like @spunky, it is a rational decision based on what I want from my career and how I perceive this will be affected by disclosing my MS, against my need for support at this time.

I enjoyed and related to your post @glawsdan. My job is a vocation and I feel lucky to be in the role I have. It can be a weight, and an employer who reacted badly wouldn’t be my cup of tea. The truth is that I suspect that my employer would be incredibly supportive, when I experienced a bout of stress and anxiety a few months after my first symptoms, they were very accommodating. I’d be supported, but I suspect that the amazing opportunities that I have access to would slowly become limited.

Your collective advice has been hugely useful in putting things into perspective. @lightning87, you’re absolutely right, before being diagnosed with MS, had I observed a colleague with a twitch or the shakes, I would have assumed that they were nervous or anxious. I’m going to focus on taking care of myself (thanks, @d1zzy) and not read too much into anything else.

Thanks all.


vixen
1 month ago

Hello @beefree. One other thing, I have only told a select few at work but this included first aider folk and people in my office (in confidence) that I take Tecfidera. Just in case of an accident, or any other medical event happens and they need to call an ambulance.


beefree
1 month ago

Thanks @vixen. This is sensible advice. Although, the options for their response will be limited to triage or calling an ambulance, as you mention, which would be the same with or without MS. There’s nothing practical they can do with the knowledge. I guess it might depend on what you do, but I feel safe enough.

Thanks again everyone.


stephz
1 month ago

Hi @beefree if worrying what colleagues think affects your work maybe saying something can help. I personally told my HR department the day after I was diagnosed – they offered counselling and support (counselling was great – the support not so much) I then told close colleagues and it went from there really. I found that once I cleared the air it was easy to move past the worry and colleagues feel more comfortable asking about it. And it’s off my mind so I can focus on work more rather than who knows what or what people might think. You don’t have to say it’s MS – I range from chronic condition to auto immune to MS – depending who it is. I’m changing jobs in 4 weeks and the new HR department asked about adjustments already (I did disclose a disability in the application and applied under the guaranteed interview scheme).

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