I have RRMS and just met my nurse 
I have no outward symptoms apart from being unable to walk for hours…I have a desk-based job so what do I do?!..I’m going to hopefully go for the Tysabri so potentially would need the monthly day-away for infusions but my job is very flexible time wise…so, should I/shouldn’t I?..I obviously can’t “un-tell” them so it has to be right!
Claire
Hi Claire
You will have to make a judgement on what sort of support you already receive as an employee who is perceived to be heal;thy. If there is someone in the firm you has an acknowledged problem speak with them in confidence about their treatment. Remember you are supported in law but having said that there are many ways individuals can be made to feel small.
Personally I would but then I am ballsy…
Best of luck
Moira
hello Claire,
I also have a desk based job & I’m affected in my right hand, balance & concentration. I had 5 months off work intermitently & told my manager of my diagnosis. They introduced me to Access to Work, via the jobcentre (which at the time I though was weird as I already had a job) & AtW are really good. They came to my workplace & talked me though my roll & decided what I needed to be able to continue my job. I have a new chair with more support & a speaking computer which mean I no longer need to type (Id like one at home!) They are also going to help with my getting to & from work as I am unable to walk far plus standing brings more pain, so there have been some positives in telling my company.
You could book an appointment with your HR department in confidence & see what they say as firms have to follow the law on dealing with disabled employees.
Good luck
Pip
Claire,
Things may be tolerable now, but what if (…heaven forbid) you had a severe enough relapse to be unfit for work for months? How would you feel if you were the employer and not told ?
You never know, with some warning your employer may even be able to make changes that make your life easier ?
Hopefully, that occasion will simply never occur …but it’s up to you whether you take the chance or not !!
(…Afraid if it was me, I’d have to tell them otherwise I’d feel that I wasn’t being completely honest with them - and I try to treat others as I’d want to be treated myself!!)
S’up to you, I suppose
Dom
If you are in work, at the same place as you were working pre diagnosis, then , yes, I would tell them. That’s what I did. I would keep it brief, no need to go ion great detail, unless you want to of course. It sounds like you will be ok for time of for tysabri since you say work is flexible. Cheryl:-)
don’t tell.
Just curious, what’s your thinking behind this, zetland ?
Thanks
Dom
I wondered also!..I feel maybe I should but an sort of concerned that I’m jumping the gun?!
I told work once it became reasonably likely I had MS - i.e. I knew for sure I had both brain lesions and spinal cord lesions.
I suppose, if I’d been lucky, it might have stayed at CIS, but it didn’t, and the rest, as they say, is history.
I think one of the reasons I told them early was to scotch any rumours it might be something else. Although I’d not been off sick, I was having quite a lot of hospital appointments, which didn’t go unnoticed, so rather than fuel speculation that: “Tina’s got cancer”, or even: “Tina’s pregnant”, I thought I’d tell them myself what the tests were about.
Whether it was due to the illness itself, or to the understandable mental turmoil I was going through, I was also aware my work wasn’t up to it’s usual standards - the volume I was getting through had fallen, and I was forgetting things, and making minor mistakes. Nothing drastic, luckily, but out-of-character for me. Looking back, I think I was just too preoccupied with the worry. I didn’t forget anything BIG - which suggests my memory worked fine when it had to - but a lot of the things that could be regarded as petty just fell off the radar altogether. You just have a completely different sense of what’s important, and what’s not.
So again, I thought it better to explain I had a major health issue, than let them think I was developing a bad attitude, or even had a drink or drugs problem.
There was absolutely no obligation to tell them about any of it - even after diagnosis. I just thought it was better for me. The only difficulty with telling them before I was diagnosed was my boss kept asking things like: “But when will you know for sure?” (can’t answer that), and: “How long before you’re in the clear?” (Had to advise him I’d never be completely in the clear, because once it’s happened once, there’s always the risk it WILL go on to become MS - which, in my case, it did).
Tina
x
It certainly isn’t being dishonest not to tell an employer. If m.s. isn’t affecting attendance or the ability to do a job then I can’t see any good reason for telling the boss. And why would the employer want to be told? If the m.s. causes a problem in the future then that is the time to tell.
Doesnt it depend on your terms and conditions and contract of employment. Some employers actually state that any medical conditions should be discussed etc…
I think its better to be honest with them.
There are good reasons to be honest with your employer about your condition. It’s natural to worry that you’ll be sacked, made redundant, forced into early retirement or passed over for promotion or bonuses.
However, the law is on your side. It is unlawful for an employer to dismiss you on the grounds of chronic illness or because you need regular treatment. Under the Equality Act 2010, your employer must make reasonable changes to your workspace and working conditions in order to help you do your job.
Be clear with your employer. Talk to the human resources (personnel) department or your line manager about the impact your condition is likely to have on your ability to work.
If you feel it will be difficult to continue in the same job, consider asking your employer to:
Talk to your manager and colleagues about how your condition affects you. For some illnesses, such as epilepsy and type 1 diabetes, your co-workers need to know what to do if you have a seizure or a “hypo” (an attack of hypoglycaemia caused by low blood sugar). You don’t need to go into details, but give them enough information to understand your illness so that they can respond to a crisis without panicking.
If, after talking to your employer, you feel you’re not getting the help and support you need, talk to your trade union, occupational health department, human resources adviser or local Citizen’s Advice Bureau branch for confidential advice on what to do next. There are also disability employment advisers who you can contact through the Job Centre.
Did you have your job prior to the diagnosis?
IF you discuss it with your employer you will have more support. IF you have to suddenly take a large chuck off work they might not be so flexible if they were not aware of your condition.
Hi, me again, I told my employer right away. I’m not so keen on the idea of telling a new employer right away if you have started a new job and haven’t told them about ms at interview. I’m not sure I’d rush to tell them in that case but if I was working for the same employer as pre diagnosis then I think I would tell. Tina made a good point about the fact that people will talk, about things like hospital appointments, and if you want to go for tysabri once a month then people might talk about that, they might even wonder why you get to go away so often. Also, if you are friendly with someone and they ask what you are doing when you go away for tysabri, would you want to come up with repeated lies about what you were doing. Might be better to say what you were doing ad if they know about your ms, then that makes that possible. Cheryl:-)