Working with MS

Hi, I am not diagnosed but have been told it is likely I have MS, awaiting more evidence! Was wondering whether many people with MS are able to carry on working, and if not, how long after diagnosis did it get to the point where working was no longer an option? I appreciate that MS has very different impacts on people, and some people are less affected than others, but I am currently self employed, and I want to try and get an idea of how things may progress, to get things straight in my head, and make a plan for the future. One of the difficulties of being self employed is that being off sick for any length of time can result in you paying out money with no income (like website fees, rent etc.)… (There are benefits too - for instance my boss is wonderful :-D). Which is why I am starting to think about this even before being diagnosed. Thanks, Leah :slight_smile:

Hi Leah,

I was office-based and lasted 14 years before I was no longer physically able to do my job.

The decision as to when is the right time to quit can only be made by the affected individual. As MS and its physical effects can vary so wildly from person to person, it’s simply not fair to try to generalise any timetable.

(I could have experienced much milder symptoms, and be happily working right now, or I could equally have had much more severe symptoms all those years ago and had to give up work almost immediately. We just don’t know!!)

For me, anytime between 1998 and 2012 may have been ‘the right time’

One of the features of MS, is its sheer unpredictability. Best we can do is take one day at a time and try to be ready to act if we ever need to.

Good luck!


Hi leah its very hard question to answer as everyone will tell you me personaly i have had to stop working as a chef as i can no longer stand for long periods and move around safely but i like to think perhaps with some retraining that i could find something for a few hours a week . it may not be MS and perhaps when you get a diagnoises you can make a better decision about work and what it might mean for you . it is so differant for everyone as you can see from some of the posts on this site that worrying about what might happen is just a waste of your time and energy . everyone here is a great source of comfort and information and whenever you need to ask something someone is always here . Take care katy

I agree with Dom. If 100 - or 1000! - of us replied to your post and told our stories of how long we lasted, it would still tell you diddly squat about what will happen to you if you do turn out to have MS. However hard you tried to sift some ‘typical’ information out of your sample, you would have no meaningful information beyond the fact that MS is highly unpredictable, and you know that already.

All a person can do, I think, is to accept the need to live with the risk of uncertainty. There are things that can take the edge of that exposure - things that can act as a financial cushion between us and the hard ground. If you have a partner in steady work, that is a good start! Then there is the question of employment status. People in steady permanent employment when MS comes along tend to be at an advantage here - no doubt about it. The financial and other protections that come with that do help to spread the load a little. In other words, the employer is obliged to share some of the risk (sick pay/putting up with a degree of poor attendance and performance/ultimately paying people to go away if things get awful), whether he/she likes it or not! In the years before dx, I had been toying with the idea of leaving employment and setting up on my own. I am awfully glad that I didn’t get around to it. This is a long-winded way of suggesting to you that you might want to think about the advantages of being an employee, if that is potentially an option for you (and your statement that you are ‘currently’ self-employed suggests that it might be).

There is no way of future-proofing one’s life. But anything you can do to reduce your financial dependence on your personal contribution at work is worth considering. Because being fit and well and able to work flat out in the long term is something that MS really does call into question like never before. You might be able to do it. But you shouldn’t rely on being able to do it - not more than you can help, anyway.


8 years and still going myself despite being wheelchair bound for 2 of them.

Make sure you’re aware of access to work when you start needing help, they will do more than just get you to and from work. I saw on ‘Saints & Scrongers’ a few days ago they helps a self employed man purchase about £12,000 worth of equipment so that he could keep his business going versus a spinal injury.

I’d have had to give up work 5 years ago without Access to Work, they are a godsend to me.

One thing I can raise is that if you do choose to go down the employed route, see if the company has a group Income Protection Insurance benefit. It’s one of the only ways I’m aware of to get cover while already having (probable) diagnosis since to offer it to everyone but the disabled employee counts as disability discrimination.

What good replies so far you have received; as they say no one can predict the course of MS. But I understand your need of knowing what the future holds so in this scenario lets presume the worst happens and you are unable to do your job or in fact any employment.

Yes as reddevilade says Access to Work will help keep employed see

If you cannot work do you have a mortgage; does your insurance cover ‘critical insurance.’

Even Richard Branson could claim DLA/PIP if eligible so start a claim.

The only Law is you must advise the DVLA when diagnosed. It is Law that you must not drive without insurance and technically you should advise your insurance company otherwise they could refuse a claim.

Now there are a few things you could do but the chances are very much in your favour you will end up with little progression. Only 25% end up in a wheelchair; which means 75% DO NOT.

Good luck


I was off for 4 years being poked, scanned and injected now back to work fulltime in London and with them dreaded spread sheets

Seriously I glad and thank my Neuro for keeping on the ball and switching me on different DMD’s

Hi I am 11 years down the line and still going strong. I changed job b4 dx as I suspected MS. in my old job I wouldn’t have lasted so I think the type of job and well as route of MS can affect what the future holds. All the best Neil

Hi all, and thank you so much for your helpful replies. I had a feeling the answer would be sort of “how long is a piece of string”, but I wanted to ask anyway and I am glad I did because all of your replies have been very helpful. My job is as a therapist so more than anyone I do understand the importance of not heading down a thought process until you need to, worrying wise, but have found myself thinking about it a lot lately. My job involves a lot of talking, and quite often I find myself tiring and slurring my speech. So it’s already on my mind - MS or not. And of course the fatigue when it sets in bad makes it so difficult to carry on - but I do. I guess in my mind I can just about cope at the moment, but wonder how well I may cope if things get worse. Luckily aside from speech, mobility wise it’s pretty easy. Alison - I did actually think about giving up now and taking a job, but I actually lost my previous job due to the impact of my previous “relapse” and that is why I became self employed ( and I was thinking about it when writing the post above which is probably why I wrote currently!) , and besides I love my new job, it is so wonderful, it is much less stressful so in a way it probably keeps me healthier anyway (def mentally if not physically). Redevilade and ggood - I had no idea about access to work so I will look into that. I hadn’t thought about dla/pip - at the moment I am from the outside at least quite normal (even most of friends don’t know about the fatigue, the mild foot drop/ left side weakness, the double vision, the eye pain, the strange icy burnt feeling when I move my head etc etc. because I just carry in regardless and manage ok - most of the time) so assumed I wouldn’t be able to apply unless very disabled or diagnosed. No critical cover - I was denied it years ago when I first applied due to a underactive thyroid - they must have known something I didn’t! Thanks so much again, I really appreciate the advice, especially as a limbo interloper! Leah :slight_smile:

Hi Leah,

Just an addition to the “critical illness” point above, IF you do go on to be diagnosed, you need to check any critical illness policy at the time of diagnosis, not wait until if/when you become unable to work. If it’s a genuine critical illness policy, rather than “income protection”, it makes no difference whether you’ve suffered any loss of income - you can be working and still collect. Some have quite a narrow window from the date of diagnosis for claiming - mine was just three months. So if you wait until too ill to work before digging out the paperwork, you might well find you’ve missed it altogether.

Without wishing to sound unduly pessimistic, in your place, I’d be checking what cover I have NOW, so that if you do find yourself with a confirmed diagnosis, you’ll know straight away whether you’re covered, and how to go about claiming. There can be few things more dispiriting than realising years later you would have been entitled to a lump sum, which you “forgot” to claim. Always check.



Hey Leah,

I’m have hypothyroidism and take 175mcg of Thyroxine, I’m also a type 1 diabetic all part of the same parcel with my type of immune system.

Anyway it’s not all doom and gloom and not everyone gets worse forever, it might take years but you can get kinda stable once you
learn your limitations then you find ways to work around stuff.

It’s all about adjusting, I spent 2 years in the gym and if I do stupid things with my body I pay the price for days later.

Find your own path and believe in yourself, don’t be afraid to push a little just don’t push to much

Totally agree with reddevilade. I’m 10 years since diagnosis and working full time. Definitely couldn’t manage this in my current job without the help I’ve had from access to work. They are absolutely brilliant.

Hi, I am currently off work (have been for 5 weeks and I hope when my current certificate runs out I can go back in 2 weeks) I want to go back to work but unless my balance and co-ordination improves I’m fearful I won’t be able to. I work in a special needs school with children 5-7 some quite small and if I’m helping one of them and cause them to fall over or if I stumble and one of them are hurt I would be heartbroken as well as in a lot of trouble! I have hinted that I don’t think I should be with the little ones and maybe I would be better off with the seniors but I don’t think they realise how I a feeling. Because I ‘look’ okay and I haven’t got any noticable problems - I just feel they think I’m making a mountain out of a molehill but if I don’t feel safe what else can I do? I want to go back to work so bad, I have worked there for 19 years so it’s like a part of me is missing.

I am sorry for not replying sooner - really busy at work and been struggling a bit so head down and focus…

Hobs - I have hypnothyroidism and Sjogren’s syndrome so am def an autoimmune type too, and no stranger to pshing through fatigue - I am coming to exactly that conclusion too - I have to balance things and believe in myself. I tend to be quite hard on myself and carry on pushing becasue I dont want to come across as lazy or weak or a worrier to anyone, think learning to be a bit kinder to myself may be my learning journey!

Access to work sounds really helpful, I will definitely get in touch with them and find out how they can help. In the meantime i guess I need to just relax!

I totally understand where you are coming from Chewitt - I love my job too, but it may be that at some point it is just not feasible or safe anymore :frowning: Hopefully the balance/dizziness will pass and you can get back to doing what you enjoy a bit more?

Thanks everyone, your replies have been so helpful, and I feel a lot more like there are options for me now

Leah :slight_smile: