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Multiple Sclerosis is different for everyone, but you may find that MS symptoms, relapses or disease progression eventually affect your working life. 

Here we discuss managing your working life when you have MS, and the help you are entitled to in order to stay working as long as you want.

We also have links to helpful organisations and interviews with people living with MS from a range of professions. In the interviews we asked them to talk about working life and managing their MS in the workplace. Their insights might give you some useful ideas to take to your own working life. We also interviewed Gail, an experienced occupational therapist who works with people with MS to help them stay in work.

The impact of MS on your working life will very much depend on the type of work you do and your personal experience of MS. Your symptoms may fluctuate and so affect your working life in different ways at different times. With the right support in place, you should be able to stay in work as long as you want to, although you may need to make some practical and emotional adjustments.

Most people with MS recieved their diagnosis as adults of working age, when they looked forward to a fulfilling career ahead. Unfortunately, many people with MS stop work earlier than they want to or need to. Working life can be a major component of personal self-esteem, and so stopping work too early can contribute to low self esteem and depression, as well as financial hardship.

The Ready to Work? report, published by the Work Foundation in 2014, identified three key recommendations that can help people with MS in the workplace:

- Take control, think proactively about your work and the adjustments you need to work effectively.

- Be assertive, tell your employer about your MS as early as possible so that you can get timely access to support at work. If you let people know early on, you will be more able to organise the best, most effective support.

- Educate colleagues, take an active role in telling your coworkers about MS and how it affects you, and let them know how changes to your working time and practices will help you to work effectively.

Here are some questions you might have about working life as a person with MS. 

How could MS affect me and my work?

There are a great many MS symptoms, all of which may make working more challenging at times. The fact that many of them are invisible to others can also make it difficult to explain them and their impact on you.

Visual problems or concentration problems could make driving or operating machinery unwise. Issues with your bladder or bowel, pain, temperature sensitivity could all cause anxiety or stress at work, and the common MS symptom of fatigue can make any tasks seem overwhelming. 

MS may affect your working life in other ways. Your journey to work, trips away on business or socialising with colleagues may become more challenging at times. You may need to think about how and when you take medication, whether frequent breaks or toilet visits will be possible, or the physical accessibility of buildings or transport networks.

I have managed to continue with very little change other than reducing the amount of overtime I do. My advice is to continue as normal as far as is possible without making drastic changes early on and deal with issues as they present themselves.

To start with, ensure that you do what you can to manage your symptoms effectively. If you feel that some of your MS symptoms are not under control, do get advice from your doctor or MS team to ensure that you have the most appropriate treatment. You may also find that diet and exercise can help you manage your MS symptoms, and give you more energy and stamina. 

You may find it useful to talk to an Occupational Health professional about your situation. Together, you can look at your workplace and see what you can do to minimise problems and make it easier for you to get around. They may be able to advise on specialised equipment that could help. An Occupational Health assessment should also help your employer understand your needs, reassure them that you are able to do your job safely and demonstrate that you are still a capable and valuable employee. Your general skills and experience have not changed, after all.

After my last meeting with Occupational Health, they installed a fan in the office, as my fatigue is worse in the heat. That's benefited everyone, as the room was often hot and stuffy.

If you do not have an Occupational Health team at work, you and your employer can use the free Fit for Work service for advice. An occupational therapist may also be useful to speak to.

Mel Smith, Petrol station cashier

In this video Mel talks to us about her experiences in the work place.

 

Mel also took part in an indoor skydive raising money for the MS Trust.

How can I explain MS to my employers?

Your employers and colleagues may never have heard of multiple sclerosis, and be alarmed or confused by the prospect of having an employee with MS. If they have heard about MS, they may not be aware that it is a highly individual condition. They might assume that you will have the same symptoms and experience as other people they know with MS.

I almost felt guilty for putting colleagues in the position I did, like how they were expected to respond. It often leads to people feeling the urge to apologise. I didn't want people to feel sorry for me, or be awkward around me. I was still the same person.

You are in a good position to educate and inform your colleagues about MS and what it means specifically for you, although it is your employer's responsibility to make sure that they are fully informed. You know best about your own situation and how you manage your condition.

You could point your colleagues to the MS Trust website, films and publications. Our section on explaining MS to others might be a good place to start. The MS Society offers a toolkit of decision tools and information sheets for employees with MS and their employers.

If you tell your employer about your MS, you still have a right to confidentiality. Your employer cannot tell others about your MS without your permission.

Andrew Blacker, Police constable

In this video Andrew talks about working in the police with MS and the importance that work holds for him.  

Everyone was very supportive and I found it a benefit talking about my MS at work.

What are my rights at work?

The Equality Act describes your rights in the workplace and when looking for employment. This Act protects people with MS (and other conditions) from any form of discrimination from the point of diagnosis. Although you may not feel comfortable with the label, a person with MS is legally categorised as 'disabled' from the point of diagnosis, which makes you potentially eligible for a range of benefits and support.

One of the key provisions of the Act is that employers are expected to consider making 'reasonable adjustments' for employees with MS. There is no precise definition for what constitutes a 'reasonable adjustment' but examples might include changing your working hours, allowing time off for medical appointments, ensuring you have regular breaks or a parking place close to the entrance, or providing a fan to prevent you suffering in the heat. Your employer should not charge you for these adjustments.

If the adjustments required to keep you comfortable at work are more costly than your employer would like, they can apply for a grant to cover the costs from the Access to Work service. This could also pay for taxis to get you to appointments comfortably, special equipment or adaptations to your workplace. You can also use this service if you are self-employed, to allow you to maintain your own business.

It can be very difficult to reduce your hours and job role because of MS whilst remaining in the same company. You can easily end up trying to do the same amount of work in half the time in order to try and prove you aren't any less part of the team.

You are not required to tell your employer about your condition unless there are specific health and safety risks, you drive as part of your job, or if you are in the armed forces. However adjustments cannot be made unless an employer has been told, and early disclosure can be vital if you are to get effective and support when you need it. In practice, many people with MS report that telling their employers early helped them stay working for longer.

I found sharing my diagnosis of MS with my work colleagues a great relief.

If you feel that you are suffering discrimination as a result of telling your colleagues about your MS, then you may wish to take legal advice. The Disability Law Service are specialists in supporting people with MS or other disabilities, and also their carers and families. They work in partnership with the MS Society and have a dedicated MS legal helpline.

Other helpful organisations include the following:

- The Equality and Human Rights Commission (EHRC) promotes equality of opportunity for people with a disability and challenges discrimination. If you think you might have been treated unfairly and want further advice you can contact the Equality Advisory Support Service.

- Citizens Advice offer free and impartial advice on all aspects of life including work and discrimination. 

- ACAS (Advisory, Conciliation and Arbitration Service) provides free and confidential advice to employers, employees and their representatives on employment rights, best practice and policies including disability discrimination and reasonable adjustments.

- Union representatives can offer direct support in the workplace. Find the union for your field through the TUC (Trades Union Congress).

- The Human Resources or Personnel department (if your workplace has one) should be able to help your employers with understanding their responsibilities under the Equality Act, and with making reasonable adjustments. You should keep in close contact with them when organising a phased return to work after an absence. 

Helena Jidborg, Web editor

In this video Helena talks about how work place changes and talking with colleagues made her day to day working life easier.

 

Helena has also blogged about raising awareness about MS and the things that we can do.

How can I look after myself at work?

Looking after yourself at work can mean thinking ahead to avoid potential problems, and also pacing yourself sensibly so you can manage the tasks you need to do. Here are some tips from other people with MS that you might like to think about.

  • Always stop for lunch and eat something.
  • Use your lunchtime to relax and save some energy, rather than doing the shopping.
  • Try to avoid travelling in the rush hour.
  • Ask about job share before accepting part time hours or change of job.
  • Ensure regular breaks to help fatigue.
  • Try to maximise energy by not doing unnecessary tasks ie prioritise.
  • Do the most important work when you are strongest.

One common solution to the problem of managing MS and working life is to change or reduce the hours you work, so that you have more time to rest each day, and more energy at the times you need to concentrate. You may be able to do some work from home, if that is appropriate for the work you do. Altering your start and finish time could allow you to avoid hot, stressful commutes on busy transport routes, leaving you more energy for your work and home life. If you decide to reduce your hours, be aware that there will likely be a financial cost to this.

Within your existing role, there may be scope to alter what you do. Can you arrange matters within your team so that you do less travelling or physically demanding work, and more seated or sedentary work? This may need to be managed carefully so that your colleagues don't feel that they are having to work harder in return. Also, travel for meetings or networking opportunities may be crucial to your career development, so think about whether you actually want to avoid them, or whether you want help to make sure you can attend them comfortably.

Within a large employer, it may be possible to change role to something more suitable to you. Again, be aware of financial costs and long term changes to your career path. You may elect to retrain in a different field entirely, or opt to become self-employed. As a self-employed person, you may feel you have more control over your working hours and working life. In reality, you may find that a lack of job security makes you feel anxious, or that you find yourself with little support, or indeed that you feel under pressure to work longer hours.

Gail Townsend, Occupational therapist

In this video Gail talks about the help that you can get to stay in work.

Quite simple things can make a big difference and allow people to stay in work

Should I change or give up work?

Some people may suggest you give up work once you are diagnosed, perhaps out of a desire to protect you from stress or discomfort, or through a belief that you are going to become rapidly unfit for work. In fact, many people with MS do not experience symptoms that require them to give up working, and can continue to work until a normal retirement age.

In the weeks immediately after your diagnosis or a major relapse, you may be feeling stressed or unsettled about the future. Avoid making big changes like giving up work right away. Take time to consider the future, and make a decision at a time when your MS is stable and well managed. 

​When I was first diagnosed,  the consultant neurologist suggested, 'Don't take major decisions till you have got used to it.' This was really good advice.

If your current occupation is physically demanding, some MS symptoms may make it harder. Equally, cognitive symptoms could make an administrative, legal or scientific job more difficult. Deciding that your current work is no longer suitable depends on you, your MS and the job. You will need to think clearly about your personal strengths and weaknesses and how they fit with your current working life.

I have managed to continue with very little change other than reducing the amount of overtime I do. My advice is to continue as normal as far as is possible without making drastic changes early on and deal with issues as they present themselves.

There may be a more suitable job for you out there, that allows you to balance the different demands on you more easily. You may find you can stay in work by reducing your hours or moving into a different role. However, there may come a time that this is no longer feasible for you. Taking retirement on medical grounds is likely to be better for you than resigning, 

Whether to stay in work, change your career path or leave the workplace should be your choice. You have options, and you do not need to feel under pressure from other people to make a change that you are not happy with. If you think you are under pressure to change your working life against your best interest, do take legal advice, contact a union representative or talk it over with a supportive colleague.​

When I was diagnosed with MS it was a real wake up call. I was doing a job I didn't feel was challenging me anymore and the commute was really long – I made a change and it couldn't have been better.

Take impartial advice about the financial impact of leaving the workplace and any benefits you might be entitled to. Discuss the situation with your MS team and your family, so you have a realistic sense of the way MS is likely to affect you in the future. 

If you do decide to leave work, think about other activities you could do to keep you connected to the working world and maintain your self-esteem. You may wish to volunteer for a charity or club, take up a new hobby or do some travelling. 

Last updated: June 2018
Last reviewed: June 2018
This page will be reviewed within three years

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