Many people are diagnosed with MS in their 20s or 30s when they may be building their career or studying for qualifications.
Others will be diagnosed later but may be thinking about a big career move or have wide ranging responsibilities. You may be concerned that MS could affect your plans. Whatever your circumstances the page below has links to resources on work and study that you may find useful.
MS is different for each person so it's difficult to say for certain if it will affect your work or education. It will depend on what type of symptoms you experience, how much impact they have and what kind of work you do. For example, if you do a physically demanding job then physical symptoms may be more of a problem. If you are in education or an office job, where you need to have a good memory and quick thinking, then cognitive symptoms that slow your thinking may have more impact.
Should I quit?
Almost certainly not. On receiving your diagnosis, others may advise you to stop working or give up your studies. This could be because they don't understand your MS or because they want to protect you from stress. However, many people with MS never experience symptoms severe enough to stop them working. People who make big changes or leave the workforce soon after diagnosis, or their first major relapse, may regret it later.
Should I do something differently?
Perhaps. You may want to make changes or you may need to make changes if your symptoms are affecting your ability to work or study. For some people, change will be a priority but others will carry on exactly the same as before their diagnosis.
Being diagnosed with MS can be the prompt to review your life, just as people diagnosed with other conditions often do. You might like to think about your work-life balance. Is it where you'd like it to be? Do you have unfulfilled ambitions? Would you like more time with your children? Would you like to take your life down a different path from the one you've taken so far?
These are huge questions and will take some time to think through. Take your time and seek advice, where appropriate.
The legal bit
The Equality Act gives legal protection to people who find that they are discriminated against at work, when buying goods or accessing services. It also applies to education.
The Act includes people with MS from the point of diagnosis even though you may not see yourself as disabled at all. Employers and education providers are required to make reasonable adjustments to support you to stay in work or education. This could include a gradual increase in hours when returning to work after a relapse, a dedicated parking place near the entrance, more flexible working hours or simply a desk in a cooler or quieter part of the office. To obtain this support, you would need to tell your employer or education provider about your diagnosis and help them to understand what it means for you as an individual.
Any adjustments can be flexible so that you can have more support when you need it most, for example, after a relapse. They should be reviewed from time to time and can be modified if your needs change. You may not need any adjustments or protection but it can be good to know where the law stands.
You may feel uncomfortable about the 'disabled' label but try to see it as a way of accessing the support you need.
Sources of support include members of your MS team, relevant staff in your workplace, charities and government schemes. For example:
- Your MS nurse can help you manage your symptoms well and this will help you to work effectively.
- An occupational therapist (OT) can analyse your difficulties at work and make suggestions to overcome them, for example, through different ways of doing things, rearranging your workspace, or getting some assistive equipment or software. In some areas, an OT may be able to visit your workplace. Your MS nurse will be able to refer you to an OT through the NHS.
- Occupational health services are offered by some employers. The occupational health professional may wish to discuss any adjustments needed to your workplace and may negotiate a phased return to work if you've been off sick for a while.
- Human Resources or Personnel staff in your workplace can help you and your manager work together to understand the impact of your MS and any adjustments needed. They also help managers to understand their legal responsibilities.
- Union representatives or ACAS (Advisory, Conciliation and Arbitration Service) can support you and will understand your legal rights.
- The Job Centre may be able to provide a work psychologist to support you and your manager.
- The Access to Work scheme may give you a grant to cover extra costs, for example paying fares to work if you can't use public transport or for adaptations to the equipment you use.
- The MS Trust can help you find information to help you explain MS to your employer and colleagues. Call our Enquiry Service on 0800 032 3839 or email firstname.lastname@example.org.
- Other charities who can give support include Citizens Advice, who provides free independent advice on employment rights through a local network.
MS may not affect your studying or your life at college or university. However, it could affect your attendance especially if you need time off for appointments or during a relapses. Also, some symptoms may make it more difficult to complete work promptly so you may be allowed extra time. Some people find that studying part-time works best.
If you're already in further or higher education, you will need to consider telling your course provider about your diagnosis. Most higher education centres have good support and can give you access to disability coordinators and, sometimes, additional financial help. Your college or university website should have information about what's available locally, usually in the section for disabled students.
The government offers financial support for disabled people who are students through the Disabled Student Allowance (DSA). This is to help with the costs of extra equipment or support that you might need to be able to access higher or further education.
The UCAS (Universities and College Admissions Service) website has information which will help you think through your options. UCAS can point you to sources of funding and suggest how your university or college can support you.
Disability Rights UK has a range of resources on education, skills, training and employment. They include factsheets, an FAQ page and a Disabled Students Helpline.
It's good to take control of your working life, or education, as much as you can. You could think through what adjustments you need either now or perhaps in the future, for example if you experience a relapse.
Looking after your finances
You may be worried about losing pay if you need time off work so check your contract and see what you're entitled to. This will be different in different jobs so it's best to find out straight away. If you're in education, you'll need to check the conditions of loans and grants to see if you need to take any action.
You may be entitled to benefits if you have extra costs because of disability. You may be able to get grants to support you in making changes to your working conditions, for example, to use specialist computer software.
Dealing with stress
Stress in the workplace, or in the run up to exams or assessments, is common. Some stress is an unavoidable part of life but you can control stress levels by changing how you react to stressful events. Learning stress management techniques and relaxation skills will help you deal with periods of greater stress when they come along.
Looking after yourself
Going to work has many benefits as well as being paid and being in education is more than just gaining skills and knowledge. You can socialise, meet new people, feel valued and pursue your goals in life. All these can be incentives to work or study well after a diagnosis of MS.
It's good to keep as healthy as possible so that you can take part in all the activities that are important to you. Lifestyle changes can help you be as well as possible. So can taking medication as prescribed to keep symptoms and any relapses under control.
No-one knows what lies ahead in life but it is good to review where you are from time to time and make plans and adjustments.
You could think about your next career move. Would you like to move up the career ladder or change your job completely? Changing career is increasingly common for everyone these days.
If you are in education, you may want to consider whether your existing symptoms could make a difference to your intended career path. For example, if you are training for a career that is physically demanding and you've already experienced symptoms that limit you physically, you could consider changing your training scheme to something that fits better with your abilities.
Only you know what you enjoy doing and whether your MS symptoms make a difference to what you can achieve. You could think creatively but realistically to make the move that's right for you.