I’m relatively newly diagnosed. I am aged 32. I was diagnosed with MS last year. It started with my eyes going blurry. I was told by my optician to go to the eye hospital. That’s when they then sent me for an MRI. The results were confirmed. I had MS.
I didn’t tell my employer because the symptoms went away after 2 weeks.
I then had an episode after a year and I told my boss. My boss told her deputy that I had MS. This was done without my permission. My boss is great but her deputy is the office gossipmonger and I’m worried or rather unsure as to who knows.
I am so paranoid now, because whenever I pass people I don’t know what they are thinking and if they know. The deputy is also showing signs of hostility towards me.
I’ve tonight told my boss that i’m unhappy that she disclosed my illness without asking me for permission to do so.
Please can someone advise me on what I should do next?
Big hugs, I truly understand your feelings. I would suggest two things, one have a conversation with your manager, who you previously trusted about why they Brock your confidence & b , someone from the union, to me, I could be wrong it sounds like your line manager is scared & does not know how to deal with it. When people don’t know what the right thing to do is, they can get things wrong, so talk to your Union. Good luck, hope things sort
I don’t know where you stand on this but as no one else has answered thought i would say hi rather than ignore the thread.(edit: sorry other answers since i started typing and got called away)
Hopefully someone with more knowledge of such things (data protection ?)will see it and have some proper answers for you.
What was your bosses reaction when you told her you were not happy about it?
I Guess your Hr department is who you need to speak too(or discuss with a union rep if you have one and trust them) How much of an issue do you wish to make of it ? whatever you do can not undo people knowing now unfortunately and could get the nice boss in trouble.
If you are experiencing hostility as a result of you MS from this deputy that is certainly not ok and i think you need to consider if you wish to put in a grievance under the companies grievance procedures(you could ask for a copy of this policy to read first without telling them why, it shouldn’t be a secret.Possibly you can read this and similar policies on company intranet if they have one?)
for the long term whilst you don’t want to talk too much about your MS it is probably something it could be helpful to have on record with HR as you could be covered by the Equality act 2010 but any protection or reasonable adjustments etc the company would be expected to make would only be required if they are aware.The equality commission can help with advise on this.
I had a bit of an episode at work today. Everything got on top of me. I have been asking my line manager to take some work away from me, because I can’t cope. She was off work and her deputy, spoke to me, today… and said, " is this because of your MS? "
I was sort of thrown back by this remark… but then I remembered that my line manager had mentioned that she’d had to tell her deputy what was wrong with me… And at the time, I didn’t object. But she didn’t ask my permission.
Since then, i’ve gone to a health assessment organised by work… they suggested a change of hours and a parking space and for some of my work to be reduced.
Work provided me with a parking space and change of hours. I’m grateful for that, and told HR as such.
However, they’ve given me more work than I had before. I got a person taken away from me, but got given five other people in return.
Today, I asked for help because I couldn’'t cope with the workload, and the deputy (my line manger was off work), asked me why I couldn’t cope… that was it because of my MS?
I texted my boss tonight, after I got home and told her I wasn’t happy with her disclosing my illness to the deputy…,
My boss sent a text back to me stating that I should have told her at the time, AFTER she had told the deputy about my illness.
Hi Ladygodiva, Sorry to hear that you’re having trouble. I don’t know your work and I don’t know your exact situation, however we are the same age and face a similar problem. I told my boss too and I’m sure he also told his boss, that’s just the way it goes. I don’t actually mind if anyone else knows about the MS, as there is no point in driving myself crazy about it and worrying about what others think. I wouldn’t personally disclose it to my colleagues, but if they happened to know, I don’t care. I am still going to just get on with it. As I said, I don’t know how it is at your work, but why do you care ? You can’t control it, so why worry ? I had another big problem a couple of years ago that I had to talk to my company about, and I drove myself insane worrying about who knew. I worried every time I walked past people and they laughed, I worried constantly and became depressed. There was just no point in all that stress, I had no control over what others think about me. Now I take it easier, I just get on with it. I advise you to adjust your thinking if you can. Again, I don’t know your work and it might be different to mine, but just for your personal peace of mind, it’s out of your control what others think of you. I hope my post helped and didn’t offenend you. All the best Emily
Sounds as though your Firm are aware of the equality act and are trying to act correctly in this respect (or at least are keen to appear like they are!) The parking space,reduced hours, and apparent reduced workload would be good examples of “reasonable adjustments” this link might be useful /www.equalityhumanrights.com/en they have a helpline you can call.I have read most of the act but its long and complicated and sometimes difficult to work out which bits are relevant. have a read and then use specific phrases such as “protected characteristic”,“Reasonable adjustments” etc when talking to HR which let them know you have some knowledge yourself and are not likely to just accept anything they say unchallenged.
If your workload has actually gone up rather than down despite the suggestions of the health assessment that THEY organised, i would certainly raise this. I am not an expert on these kind of things but when fighting my wifes employer when they were trying to dismiss her, i made sure all communication was by email or writing rather than verbal,and in fact got her to write an email to make sure that due to the mistrust we had in them this was both ways from day one.I was later advised by Acas that Email was acceptable as evidence by tribunals if needed so is good practice.Do you have a union Rep to advise you?
Ok so perhaps the above all sounds a bit confrontational anti employer/bosses but worth bearing in mind, knowledge is power etc so get as much info as you can and keep in mind for potential long term.Hopefully not needed.
However if i put my more reasonable head on and obviously i wasn’t there so i don’t hear tone of voice,see facial expressions,don’t know the person etc but " is this because of your Ms?" is possibly not an unreasonable question? did the shock of it being mentioned make it seem worse do you think?she may have been briefed that allowances need to be made if it is,but she is only a deputy and won’t really understand the ins and outs and possibly less scope to actually make decisions. If you answer yes this then justifies removing work from you?
My wife has almost certainly got Ms and i don’t have a clue what to say or do to support her so it must be difficult for the bosses at work too! If i say the wrong thing to her i can just apologise and give her a hug soon afterwards but they cant do that and will probably be worried about the legal implications of not doing everything 100% right,they are human(hopefully) and this is also a difficult and unusual situation for them and they may feel they are treading on eggshells,hopefully the situation will get better as both they and you get used to it!
Hopefully i have offered some balance here and haven’t offended?
I remember being at work not too long after diagnosis and going to a meeting on the other side of London with a colleague. After the meeting, we should have got the tube back to the office, but my lovely workmate could see how knackered (quanked, if only I’d known it at the time) I was, and just announced, ‘we’re getting a cab’. And he insisted on paying for it too.
Sometimes there are benefits to your colleagues knowing.
It didn’t make any difference to the work I did or was capable of. It was just possible for a small act of generosity and sweetness right when I needed it.
I am so sorry that I forgot to return here until today. I am off work for now as I have had a further complication. However, I just wanted to thank you all for your helpful replies. I am not at all offended by anything I have read here. In fact, I realise that my thinking needs to change as does my sense of paranoia. Its hard to change the way I think… but I could always turn my negative thought into a positive one, but making myself believe it, is another thing altogether. Thank you again. All of you.