Work problems

Hi all

I hope everyone is doing Ok or as well as can be.

I was diagnosed with rrms a coupe of weeks ago and have an appointment with my MS nurse on the 17th to discuss medication which is great news

I have been very open and honest with my employers at every stage throughout my diagnosis and yesterday I got hauled into a meeting which basically made me feel that a) like no one has listened to me for the last 6 months and b) like all my hard work and being a loyal employee for the last 7 and a half years was for nothing.

My employers have up until now been quite good in reducing my work load and letting me change my hours so I now start work at 7.30 am and finish at 4.00pm which gives ne more time to try and chill out when i get home. I should have known the understanding wouldn’t last.

However yesterday when I explained that I had an appointment with the nurse to discuss medication one of my employers turned to me and basically said “great so how long until your better?” Then followed it up with "when will you be back to working at full capacity.

I don’t know how to make them understand that i will never be “better” that MS is something I have for life and will be dealing with on a daily basis. Of course some days will be better than others (I hope).

I just feel as though they were saying that if Iwasnt back to working a full capacity I was going to be a burden on the company.

I’m sorry this is a bit of a rant, I just really needed a moan as I just felt so angry but it was only afterwards when I really thought about what had been said that I wished I had stood up for myself

Anyone else finding the work life / MS balance a bit of a struggle?

Best wishes

Gemma x

Hi Gemma, first of all welcome. I understand fully how frustrating employers can be because they don’t understand the implications that come with ms. You’ll have good days and hopefully not too many bad days. I have recently had to take ill health retirement because all avenues had been explored and my only other option was termination on grounds of incapacity. It was the end of a long, drawn out period of sickness (I’d been off work for almost a year). Now I’m waiting on the pensions dept. When you see your ms nurse she should give you some sound advice re your employer. Also do you have an occupational health department because they can liaise with your employer to make any workplace adaptations. I hope you get sorted because stress can make symptoms worse and that’ll be the last thing you need right now. Take care. Julie xx

Hi Gemmajane, firstly they don’t have the right to drag you in a meeting without prior notice, are you a member of a union? I would suggest to take a rep of some sort in any meeting relating to work & your illness.

You have rights Under the equality act. search the Internet. There is also access to work that can help with the practicalities of assisting you to stay in work ,they have useful info as well.

we are just a number to them, don’t allow them to push you around find out about your rights so they can’t do this to you.

my employer also has no idea or interest in how MS affects us.

Good luck xx

Hi Gemma,

li am absolutely outraged at how you have been treated. That is bullying to say the least. I would keep a record of everything like that that is said to you. Total lack of understanding of MS - how long until you get better!!! Working up to full capacity - the idiots.

You should be able to ask for a meeting regarding reasonable adjustments - these can include shifting your hours but also time off for medical appointments. They should also ensure your seating is ok for you plus any computer equipment - I think access to work can assess you. But your company I think would have to pay for specialist seating.

They obviously know that you are disabled. They should therefore be aware that you are covered by equalities act. They should also be aware that they should arrange a meeting with you to discuss reasonable adjustments. If they don’t then this is disability discrimination.

Do you work for a large company with policies. As I work for the NHS we have hundreds of policies and that is definitely unacceptable bullying behaviour.

Can you be referred to occupational health? They can be very helpful if management take any notice of their reports.

Trade Union also should help.

hope things get better for you and don’t let them drag you down.


min xx

Hi Gemma

I think I have seen quite a lot of info on-line which would help you know where you stand re work - here for example

I have also seen some info leaflets which you could give to your employer which would help them understand.

Their attitude doesn’t sound too good but I think it is quite difficult for people to understand what MS is all about. It took me a while and I have it!

Very best wishes


1 Like

Hi Gemma

I would echo what David has said. Your boss possibly doesn’t know about MS, doesn’t realise it is covered under the Equality Act and doesn’t realise there is no cure. If you obtain a copy of the Work and MS booklet (follow David’s link) you can hand this to your boss and ask for another meeting (with moral support next time) when they have digested its contents.

I have found the advice in the leaflet invaluable (and my employer is very understanding). The section about meetings and recording what has been agreed is very useful as it protects both you and the employer.

Best of luck to you

Tracey xx

Hi all

Thank you so much for your words of support.

I spoke to the head of HR and made an appointment to sit down with her and go through things properly.

Fingers crossed things might get sorted work wise.

Thank you all again.

Best wishes

Gemma xx

Hi Gemma,

Try and get your union rep to attend any meetings with HR, or a close work friend, who will be witness of the event and what is talked about and maybe agreed. It is hard to rmember the event and the extra support will be good for you.