Hi everyone, this is my first post. Was dx feb 2012 and only my family, husband and best friend know. Feel unsure about telling others especially work! Feel like I will be looked at differently. My parents have said I shouldn’t tell work. Feel like I have this huge secret and my friend thinks I should tell work.
Hi
Telling others is a personal thing and only you can make that decision.
For what it’s worth, I didn’t want anyone to know initially either because I didn’t want pity/sympathy as I’ve never been able to cope with it. It just makes me cry and I would rather have people make fun of me because I know how to deal with that! (I’m one of 5 children so that’s what I grew up with!) However, a trusted friend told the rest of my village so the truth was out before I was ready for it. We had words and I never trusted her so much afterwards. MS certainly sorts out who your true friends are …
At work I only told the colleagues who work closest with me and who were likely to be affected by my absence. I needed to reduce my hours and you can only ask for reasonable adjustments if you have disclosed your illness. It’s the only way you can be covered under the Equality Act too as your employer cannot protect you from discrimination if they don’t know you are classed as disabled. Some of my co-workers did treat me differently which did make me more worried about telling other people about my MS. They certainly weren’t very sensitive to the way my diagnosis had hit me (I had been healthy just 3 months before and it had come out of the blue) and I had to deal with all the emotions that went with it. I probably wasn’t very easy to get along with for a while but I had tried to explain to them how much of a shock it was and they didn’t want to listen … In fact when I tried to explain what it was like living with such a variable condition and not knowing from one day to the next if my legs would work or not one of them replied with “We could all get hit by a bus tomorrow …”!!
The following year I held a Cake Break at work (my second one) and I wanted it to be a huge success so I announced my illness to the whole of the workforce. I was fed up of it being like a dirty secret and felt that it wasn’t my fault and it wasn’t as if I had done anything which caused MS so why should I hide it any more. To my surprise they were really supportive and several told me about their own chronic conditions which I had been totally unaware of before this. It’s funny how we all have these secrets which we don’t feel able to share for fear of how people will see us. If anything it has brought me closer to some of the staff that I didn’t used to talk to and I have made some good friends amongst them. That proved to be a blessing as I had a major fall out with my (then) line manager and have since been moved sideways to a new, very empathetic line manager. I really needed support at the time and it was good to have people who understood why I was so down about it all and could see how unfair the whole situation was.
I’ve since had two more bad relapses and had to use a walking stick in the workplace so I’m glad now that they were all forewarned as I didn’t have to explain. When they see me struggling they will just help without making a fuss. That’s exactly what I needed. It’s also given me the confidence to tell other people outside of work, for instance telling other participants at my yoga class, where again I have kept quiet up til now for fear that people will be giving me odd looks or looking to see if they can spot that I am different. Again, I have had really good support from people there. It’s such a shame the close colleagues that I had thought were friends turned out to be so sham.
You will probably get different reactions from different people, that’s just human nature. On the whole my experience has been positive and my employer (further up) has been excellent, making adjustments when I needed them etc. I’ve decided that the people who treated me badly are the ones with the problem - not me. I can live without negative people so I just steer clear of them. My employer made sure I don’t have to work with them anymore so it’s all sorted.
Good luck whatever you decide to do.
Tracey xx
Hiya, why not tell people, you have nothing to be ashamed off, tell work, tell the co workers who need to know, tell family and friends if asked by them any problems, word will get around, why hide the disability, it’s not contagious, as for the best friend, maybe she did tell all for the best intentions, to save you, to perhaps save embarrassment to you later, Brian
Sometimes holding back is because you havnt come to terms of what has happened to you yet, like corri and elmo said you have nothing to hide they cant help if they do no, stand tall n tell who ever needs to no flower. x
If you can think of one good reason for telling peole at work then go-ahead. If you can’ think of a good reason then don’t tell them.
No-one needs to know. Why? Everyone has something, and we don’t all discusss medical histories around the table. A lot of the guys I work with are hormonal or neurological. They don’t talk about it generally.
I recently changed teams at work and took on new management responsibilities for four employees. Previously, I’d only told my direct manager, but last week we were moving some boxes of files around the office and I had to stop helping as my dodgy left arm was going numb. They’re a lovely team but I could sense they thought I just couldn’t be bothered to help so I just said I was sorry I couldn’t help any further and briefly explained I have ms and among other things it causes weakness in my arm. They were very understanding, asked me to explain a bit about it, thanked me for telling then and asked me to let them know if I needed any help with anything in future. I was worried about whether or not to tell them before hand but I’m glad I did now -hopefully it’ll help to prevent any misunderstanding in future if I can’t help out with the more physical stuff at work.
Thanks for your advice. My main reason is I think i haven’t come to terms about my condition. Am starting copaxone on Tuesday so maybe then it’ll hit home…?
It has taken a whole year since diagnosis for me to even consider telling anyone other than very close family and I think that had a lot to do with me not really accepting the diagnosis. But worrying that people at work might think I was shirking from helping out was stressing me out more than the thought of them knowing! Everyone is different, so just do what’s right for you. Good luck xx
I would suggest telling your manager or HR department at work simply for insurance purposes. If you have an accident (God forbid of course) and you have not told them then it could cause problems. You can ask for it to be kept private from your colleagues if you wish.
If you do want to let them know then have a lot of leaflets ready cause many people do not know what MS really is or how it can affect people.
Good luck hun in whatever you decide
JBK xx
Hiya
It’s definitely a personal decision.
I agree with JBK though.
I decided to tell my Line Manager, HR and the Health and Safety department and to be honest they were all really helpful and kind. No pity, just practical advice on stuff.
For example, if there was a fire there was a nominated person to come to my room and help me exit the building quickly and also HR and my Line Manager asked if I would like to move from the first floor to the ground floor which was really helpful.
Good luck with whatever you decide. I am sure you will make the right decision for you whether it be now or later.
Shazzie xx
I told my manager in january because I was having a relapse and needed to go to the hospital. It meant I got the days I spent in hospital being diagnosed and treated as medical leave. I also wanted them to know because if I felt ill at work they’d know what was wrong and help me. It is also something you need to tell occupational health and HR. I had a lovely chat with the work nurse, she knew loads about MS and I felt very supported. Then of course you have to tell the DVLA. I’ve told everyone and most people have been really kind and understanding. None have looked at me pityingly. Some insist on telling me they know someone else with MS who have lived to their 80s with no ill effects - I ignore them!