Multiple sclerosis is different for everyone, but you may find that MS symptoms, relapses or disease progression affect your working life at some point. The impact MS has on your career will very much depend on the type of work you do and your personal experience of MS. Your symptoms may fluctuate and so your working life may be affected 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 receive their diagnosis when they're of working age, and looking forward to a fulfilling career ahead. Unfortunately, many people with MS decide to stop work earlier than they want, or need, to. Working life can be a major component of your 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 is a wide range of MS symptoms, some of which may make working more challenging at times. Some of them are invisible to others, such as fatigue and altered sensations, which can make it difficult to explain how they impact on you.
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 trips will be possible, or the accessibility of buildings or transport networks.
A good place to start is to ensure that you're managing your symptoms as effectively as you possibly can. If you feel that any of your MS symptoms aren't 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 any problems and make your working life easier. They may be able to advise on specialised equipment that could help, or it may be that something simple like moving to a desk in a quieter area of the office or closer to the toilets, makes things easier. An occupational health assessment will hopefully 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.
If you do not have an Occupational Health team at work, it may be useful to speak to an occupational therapist if there is one in your MS team.
How can I explain MS to my employers?
Your employers and colleagues may never have heard of multiple sclerosis, and so could be concerned about 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'll have the same symptoms and experiences as someone else they know with MS.
You're in the best position to educate and inform your colleagues about MS and how it affects you, although it is your employer's responsibility to make sure that they are fully informed. You're the expert on your own situation and how you manage your condition.
You could point your colleagues to the MS Trust website, films and publications. Our information sheet Someone I know has MS 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.
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, you're legally categorised as 'disabled' once you're diagnosed, 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's 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 if you're affected by temperature sensitivity. Your employer should not charge you for any 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, 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.
You're 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 support when you need it. In practice, many people with MS report that telling their employers early helped them stay working for longer.
If you believe that you're 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.
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.
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 what 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.
Try to avoid travelling in the rush hour.
Ask about job share opportunities before accepting part time hours or a change of role/job.
Ensure regular breaks to help fatigue.
Try to maximise energy by not doing unnecessary tasks, prioritise the most important ones and do them when you have the most energy.
One common solution to balancing MS and your 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. Or you may be able to do some work from home, if that's possible in your role. 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 financial implications.
Within your existing role, there may be scope to alter what you do. Can you arrange it within your team so that you do less travelling or physically demanding work if you struggle with fatigue? Could someone else take notes in meetings so you can focus fully on what is being said if you struggle to concentrate? This may need to be managed carefully so that your colleagues don't feel that they are having to work harder to accommodate you. 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 more easily.
With a large employer or organisation, it may be possible to change role to something more suitable for you. Again, be aware of any financial implications or 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.
Should I change or give up work?
Some people may suggest you give up work once you're diagnosed, perhaps out of a desire to protect you from stress or discomfort, or through a belief that you are going to rapidly become unable to work. In fact, many people with MS don't 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 following a major relapse, you may feel stressed or unsettled about the future. Avoid making big decisions like giving up work right away. Take time to consider the future, and make decisions about any changes at a time when your MS is stable and well managed.
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 whether your current role is still suitable will depend on you, your MS and the job. You'll need to think clearly about your personal strengths and weaknesses and how they fit with your current working life.
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 to carry on and you come to the decision that it would be better to stop working. 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 shouldn't feel under pressure from other people to make a change that you're not happy with. If you think you are being pressurised to change your working life against your best interests, do take legal advice, contact a union representative or talk it over with a supportive colleague.
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 stop working, 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 if your finances allow this.
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The Equality Act - gives legal protection to people from discrimination at work, when buying goods or when accessing services. It also applies to education.