How many of you have told work you have MS? I was diagnosed 2 months ago but decided not to tell work. I work from home on a website full time but as long as I get my jobs done and fill my contracted hrs they are flexible hrs. This means I can work a couple of hrs, rest for an hour or so and go back to work again, I do try do fill my days hrs that day though so I can sit with my family of an evening. They are such a nice helpful company I am worried if I tell them they will reduce my hrs thinking it will help me…but that will reduce my salary of course. They may also change my work as I have quite important access to management on the content and personal confidential records etc which many others on the company do not have. I do not have to drive, can just break, get to apointments easy without telling anyone so am I doing right?
Hi Zoe, I was diagnosed about a year ago. I am in a very similar work situation to you - i.e. work full-time from home. Everything I do can be done with a phone and a computer, so I don’t need to attend in person, or very rarely, anyway. I told work straight away, because I was worried my performance was beginning to be affected, and I wanted them to know I had a health problem, not an attitude problem! It’s nothing drastic, but I knew I just wasn’t getting through the same volume of work as before, and also wasn’t showing much ambition or initiative, because it was all I could cope with just to keep going with the essentials, and deal with this illness. So I thought they needed to understand why I was struggling, before I got a bad review. I also thought it was important to get the full protection of the law. Your employer has to make “reasonable adjustments” for your MS, if they know about it. However, if they don’t (because you haven’t told them), they haven’t got to do a damn thing! So I thought it was much better to tell them, in case I needed any adjustments (even if I don’t yet), than to say nothing, and then spring it on them at a later date. If they know I’m not well, at least they can bear it in mind. They are not allowed to unilaterally reduce your hours, just because you disclose you have MS. That would be illegal discrimination in itself. Any measures to “help you” have to be mutually agreed. They can’t just impose what they think would help, without consulting you. Reduced hours might well be an option that crops up (it has with me), but you’re under no obligation to accept, if you don’t want to. For me, it’s helpful to know my employer would offer the compromise of reduced hours, if I felt I needed it, rather than having to quit altogether. I’ve no intention of taking it up yet, but it’s nice to know it needn’t be full-time or nothing. They’re not allowed to arbitrarily change your work because you have MS, either, with the possible exception of health and safety matters - e.g. if you had impaired vision, they obviously couldn’t knowingly let you drive. But that doesn’t seem a very likely factor, in your case. There’s absolutely nothing about MS that makes you unsuitable to access confidential files, if you were allowed to before! MS doesn’t suddenly make you irresponsible or untrustworthy. As you say your employers are nice, it seems unlikely anyone would ever suggest that. But if they did, you would just have to explain patiently that, although you are ill, you haven’t had a personality transplant, so there is no reason you would be less careful of others’ data. MS is not widely understood, so they may be fearful you might faint, or have fits or something, whilst working alone in the house. Although this is a possible complication of MS, it’s pretty rare, so if it’s not a problem you’ve ever had, you’ll just need to reassure them that no, it doesn’t affect you that way - and is very unlikely to. My employers were quite concerned about whether they’d done anything to cause my illness. I had to explain that nobody knows exactly what causes it, so I couldn’t say for sure. But explained that it’s a brain thing, so I wouldn’t have got it from bad posture at work, or staring at the computer or anything. They seemed relieved by that (I’m not gonna sue!) Ultimately, only you know whether it’s best to tell your employers. There might be a time when you have to. I decided not to wait for that time, but to be completely upfront from the start. So far, I haven’t regretted it. I’ve noticed my boss is a little fearful of allocating me new work, in case it proves too much. So boredom has been an occasional problem. But really, it’s up to me to tell him if I’m ready for more, so it’s my fault as much as his. I think it’s much better that he’s cautious, than shoves it onto me without checking if it’s OK. Hope this is some food for thought. Good luck, whatever you decide! Tina
Hi Zoe. To tell or not to tell…hmmm, I’d say tell them. As Tina said telling them does get you covered by the DDA and if at sometime in the future you wanted to apply for ‘reasonable adjustments’ or a piece of equipment to make work easier on you then you wouldn’t be flat footing them. If they are a good company they will only want to do what they can to help. My comany was chilled about it, let me have as much time as I needed to decide what I wanted - I chose to reduce hours and vary my job so they found me a vacancy that fitted my needs - it sounds as if your job right now is ideal for you as you can set your timetable. If/when you tell them make it obvious to HR that you are only notifying to be courteous, and that you are fine, can cope and will of course tell them if you need anything! Don’t be too worried about the ‘lone worker’ as side of things - you already are one and anything that could happen to the ‘new you’ could just as easily have happened to the ‘old you’! (my new job is infact 80% lone working when before the MS I worked with a team so it is very simple, just risk assess your surroundings.) If in the future you do need any support, equipment etc it might be worth your while to talk to the Access to Work team in your area as they can help wih many things (in my case a support worker for the one area I am not able to do on my own - cooking for others - and travel costs.) Good luck whatever you decide to do Clarexxx
Excellent reply from Tina. Nothing to add really! I’m in the “tell them” camp too for what it’s worth, but you aren’t legally obliged to. Incidentally, you could just tell your boss and/or HR - you don’t have to tell everyone, and you can ask your boss/HR to keep it confidential. Karen x
My policy was to let those know who needed to know - HR & line manager - and take your time to tell the rest, may not need to say anything unless you want to explain symptoms. Give yourself time to deal with it and you’ll gradually feel comfortable telling others.
My policy was to let those know who needed to know - HR & line manager - and take your time to tell the rest, may not need to say anything unless you want to explain symptoms. Give yourself time to deal with it and you’ll gradually feel comfortable telling others.
I was diagnosed several years before I started at my current job, but luckily was reasonably symptom free when I started there. I didn’t think it necessary to tell anyone then. It was not until several relapses later and my walking started to get very bad that I told my manager. He informed occupational health and HR and we organized some new working arrangements for me that made life a lot easier. I did end up telling other people slowly on a sort of need to know basis since then, when people question my stick and odd start and end times. But initially I found it very hard. Since then I must say work have been brilliant and I certainly think it was the right thing to do - but I didn’t do it until I felt it was necessary and I was ready. John
Hi, Very quickly, i used to work until i had my daughter, but when i was dx’ed what i found out is that you don’t have to tell work unless they ask you if you have ms, which is how they found out that i did.
and they have to make ‘reasonable adaptations’, if necessary.
Not been on the site much as past few days as cant access the new site from my smartphone :? so got the laptop out tonight to catch up. just wanted to drop a quick reply to your post. I agree with what many of the other posters have said and believe you should inform your employer. This is important should a problem arise that they are aware. In your circumstances you are very much your own boss and able to be flexible in how you fulfil your contractual hours. But while you may in fact be often doing more than your contractual hrs due to your flexible approach, it is possible that an occasion may arise where do to your MS ie fatigue you were unable to do a lot that day or deadlines were difficult to meet. If your boss is aware these times if/when they occur will be easier managed. Your diagnosis has not made you incapable to do your job, your still the same hard working member of staff you were before your diagnosis and if your boss is made aware of you illness and kept informed of any changes to your health, it should make things a lot less stressful in the long run. Which is important for your longer term health and well being. They may even be able to help either directly or in conjunction with access to work equipment if/when it is required ie ergonomic assessment of your home work station, computor aids, bigger screen etc
All posts here read, thank you. I am still undecided though. The company I work for is quite unique, we are all spread over the whole of the UK and no one I work with lives near me. I spend all day home alone working with stopping for a break when I like etc. Many I work with have never met me or even know what I look like and it is a couple of years at least since any of the few I met have seen me - that includes the directors! There is the rare telephone chat and skype chat but it is just work ‘does that look okay’ or ‘can you do that’ type thing. My contract does say I am responsible for providing myself a suitable work environment and mainting the equipment needed and I use. I complete a health and safety assessment but I can’t see that changing, I have a message chair I switch on when I feel like it and move, take advantage of the flexibility of my hrs when I want to. As per any health and safety its upto me to aviod injury and hurting myself - and I know there is nothing my company will do for me in that way as I am home and comfortable. I get paid sick leave etc but have only taken it once and try to avoid it as I can relax when I want to within the day.
Hi Zoe, well if you are able to keep up with your tasks without letting your work know of your condition, then why tell them? But if things become too much for you, it may be best to reduce your workload, eh? luv Pollx
MS43 wrote:
Hi Zoe, well if you are able to keep up with your tasks without letting your work know of your condition, then why tell them? But if things become too much for you, it may be best to reduce your workload, eh? luv Pollx
Thanks Poll, that is what I have been thinking. Zoe x
Hello, I didn’t tell where I am when I started with them, because I only had vague symptoms and no firm diagnosis, although I knew I was not 100% well as I had an initial relapse nearly 15 years previously when MS had been mentioned. I then felt bad about telling them later when I was having tests and being told I was now SPMS. Consequently I have always felt a bit guilty and if I had to leave for health reasons am not sure if I would feel completely comfortable about taking any financial package. I rather wish I’d been honest upfront - but was scared, both about the illness and also about not gettng the job, which I really wanted. ( I had passed the Company medical at the time, though). Good luck, listen to your conscience - perhaps just tell your Manager and he/she will let HR know as appropriate. Gill
norfolkbabe wrote:
All posts here read, thank you. I am still undecided though. The company I work for is quite unique, we are all spread over the whole of the UK and no one I work with lives near me. I spend all day home alone working with stopping for a break when I like etc. Many I work with have never met me or even know what I look like and it is a couple of years at least since any of the few I met have seen me - that includes the directors!..
Not that unique. In fact, I’m starting to wonder whether we work for the same company. 
But it’s getting increasingly common, especially in the IT Sector. After all, why are employers going to want to pay for large, expensive, office blocks, when a lot of the work could be done from any computer, anywhere? We tend to have a small number of “hotdesks”, in key locations. But if everyone who works from home decided they wanted to work at the office, all at once, we wouldn’t have enough places! But anyway, that’s all by-the-by. I’m not trying to sway you one way or the other, but I still decided to be open with my employers, even though they don’t usually see me. And yes, some “colleagues” have joined and left without us ever meeting face-to-face! I just thought it easier to pave the way a bit before anything bad happens, than to wait 'til it did, and everyone would be in shock. Even though I work from home, they’re not silly; they can tell if I’m not online, or not taking calls for a couple of hours, because I’m at the doctor’s/hospital/resting. I thought, if I didn’t explain the situation, these mystery absences, along with a changed perspective at work, would eventually trigger questions. I’m not saying I’m less conscientious…BUT: it aint the top priority any more, is it? Not once your health is at stake. Don’t get me wrong: I still meet my obligations - deadlines etc. But I’m a lot more philosophical. I often ask myself: “Is anyone going to live or die because I did/didn’t do this?” The answer’s invariably “No”, so in that case, it can usually wait 'til tomorrow, or in some cases, be dropped altogether. I’ve got a completely different notion of “urgent” or “essential” now, and most stuff just isn’t. In some ways, it’s healthier; I’m not sure everything I always thought was urgent or essential ever was. BUT, because I’d always treated it that way, my employers would have expected more of the same, if I hadn’t explained why things are different now. I’m not any “less committed”. I just have an issue I can’t leave aside during working hours, because it’s part of me. But there are other reasons too. If I do end up needing a lot of time off, I won’t have the hassle of explaining at the time, when I’m ill, because they already know. My boss knows that in the worst case, I might have to report to the relapse clinic, and be admitted to hospital. He’s already said that if that happens, just to do it - I won’t have to mess about telling work what’s gone wrong with me. It’s like “standing notice” of sick leave, if you like. Obviously, once things are under control, I’d need to get in touch with them and let them know what’s happening. But I don’t have to do it as a priority. If I go AWOL suddenly, they’ll know. I also thought it’s worth getting my case on the radar, in case I want stuff that can help me. I’m certainly interested in voice recognition software, if my eyesight or typing ever got too bad. If work know my situation, they’ll be half-expecting me to ask for something, and hopefully buy it for me. This could prove very useful. I feel almost guilty I haven’t asked for anything yet, for the simple reason I’m unable to think of anything. But they keep stressing: “If there’s anything you need…” So it’s not all bad, at all. Tina x