http://www.mstrust.org.uk/info/talking_about_MS.pdf

January, 2003
MS Trust

Talking about your MS to family, friends and colleagues

There is no denying that living with MS can be difficult, frustrating and at times, frightening, particularly when you are first diagnosed. It can take some time to come to terms with the fact that your life is likely to change and it is natural to grieve for what you may lose. In the initial stages, it is likely that only those who are very close to you will be aware that you have MS. Once you have had time to adjust, you may want to think about telling a wider circle of people. Choosing whether you want to do this and how you might do so can be a complex decision. This factsheet aims to provide some ideas to help you to think about these issues.

Telling friends and family for the first time

MS doesn’t only affect you – it may also impact on those around you. Broaching the subject for the first time with family and friends can be a little daunting. However, keeping things hidden can be a great strain, so it is often a relief to get things out in the open. The chances are that you will find most people to be sympathetic and supportive when they are aware of your situation.

• There is no right and wrong way to tell people, just as there is no ideal time. Some people begin by telling only family and very close friends initially and then gradually inform others when symptoms become apparent or they feel ready to be more open about their condition. However, there is no need to hide the fact that you have MS and you may prefer to talk openly about it from the outset – just do whatever feels right for you

• You can never predict how people will react when you tell them. They will probably experience a mixture of emotions, just as you did when you were first diagnosed, and will need some time to adjust to the situation

• Encourage those around you to build up a good understanding of what MS is and the issues that are of concern to you. Finding out about the condition may allay their own fears and helps avoid misconceptions about MS. For example, there is a common myth that everyone who has MS will end up needing a wheelchair, which is far from the case. The MS Trust can provide information ranging from brief overviews of MS to detailed information on symptoms and management.

• It is particularly difficult deciding when to tell your children that you have MS. How much information you provide and when you do so will depend upon their age and how they might react. In many cases, it can be helpful to start by providing small amounts of information and gradually building up. If children are quite young, it may be best to answer questions simply as they arise. Children are often concerned that their parent with MS will die. Reassurance that this isn’t the case can relieve a great deal of anxiety. The MS Trust has two booklets specifically for children under 10 who have a parent with MS. My Dad’s Got MS and My Mum’s Got MS aim to provide children with an opportunity to talk about MS and to raise their concerns

• For older children and teenagers, you will need to gauge the appropriate level of information. The MS Trust has booklets that may be useful when explaining MS to older children.

• Why do I want to tell them?
• What benefit will there be from telling them?
• What disadvantages might there be?
• Why do I feel they need to know?
• Is this the best time for me to tell them?
• What are they likely to do with the information?
• If I only want a few people to know, will they respect this?
• Am I able to deal with their reactions and questions?

Even if your MS is common knowledge, you will still need on-going support and help from those around you. Most people have no idea what it is like to have MS and you will need to express your needs clearly so that people know best how and when to help and support you – an on-going dialogue is essential.

• Be honest and open about how you feel. It is natural not to want to worry your family and friends, but it is important that you feel able to express your feelings when you need to. Putting on a brave face all the time may leave you feeling isolated and frustrated and you risk shutting them out

• If you go through a bad patch and life feels like an enormous struggle, talk to somebody. If you are worried about upsetting those close to you, there are other people you can talk to. For instance, your GP can refer you to a counsellor or a nurse

• While it is good to talk about your feelings, try not to let MS dominate your conversation at all times. You risk others thinking of you purely as a person with MS

• Some of the symptoms of MS, such as fatigue, are not obvious to others. Sometimes you will need to spell it out if you need a hand. People usually want to help but they need to be told how and when. If your MS makes you are prone to mood swings, it might be helpful to warn people in advance so that they know what to expect and don’t take it personally!

• Remember that your family and friends may need your support too and possibly that of health professionals or counsellors. They will probably find it upsetting that you have MS and may have other problems of their own to cope with – it is a two-way process.

• Driving – people with a driving licence who have been diagnosed with MS must tell the DVLA (Drivers & Vehicle Licensing Agency). A medical assessment is required to confirm that your driving performance is not impaired. Should you require the controls of your car to be adapted, the law requires this to be specified on the licence.

• Insurers – Insurers require that you declare any relevant information, medical or otherwise. If you don’t declare this information, you run the risk of their refusing your claims.

If you work, the chances are that you may at some stage want to tell your employers and colleagues that you have MS. This may be because symptoms are affecting your work or because you need special equipment or would like to change your working patterns.

• It is difficult to decide on the right time to disclose your MS to the people you work with. Some people prefer to be upfront as soon as they are diagnosed with MS, while others continue working normally for many years before they feel the need to tell their colleagues, if at all

• There is no legal obligation for you to tell your employer that you have MS unless your condition presents a health and safety risk. However, you must not mislead your employer and you have a duty to answer medical questions honestly

• If you cannot face telling your employer yourself, ask somebody else such as a colleague, a trade union representative or a Disability Employment Adviser (DEA) to help (see the end of this section). Make sure that your employer and colleagues understand what MS is and how it is likely to impact on your ability to perform your job. Reassure them that you can still make a valuable contribution. The MS Trust can provide information to help you inform your employer and colleagues about MS

• Many employers are extremely supportive and flexible in terms of accommodating changing requirements. You will need to make it clear if your MS is impacting on your work. Often it is the ‘invisible’ symptoms of MS, such as overwhelming fatigue and lapses of concentration, which can cause particular problems in the workplace but may not be obvious to those you work with. Make sure that your colleagues understand that fatigue is a symptom of MS and that you are not being lazy!

• The rights of people with MS are covered by the Disability Discrimination Act 1995 (the DDA). A key provision of this is that employers are expected to consider making ‘reasonable adjustments’ for staff with disabilities. There is no precise definition for what constitutes a ‘reasonable adjustment’ but examples include improving accessibility, changing working hours or supplying specialist equipment. If you work for a large organisation, the human resources or personnel department should be able to help

• Information about general employment rights can be obtained from a number of sources including Citizen’s Advice Bureaux, ACAS, the Disability Services Team at your local Job Centre, The Disability Law Service and your trade union or professional association. The MS Society can also provide information on work-related issues and publish a booklet called Working With MS

MS Trust
Tel 01462 476700
email info@mstrust.org.uk
Web www.mstrust.org.uk

MS Society
Helpline 0808 800 8000
email info@mssociety.org.uk
Web www.mssociety.org.uk

Advisory, Conciliation and Arbitration Service (ACAS)
Brandon House, 180 Borough High Street, London SE1 1LW
Helpline 08457 47 47 47
Web www.acas.org.uk

Disability Law Service
Ground Floor, 39-45 Cavell Street, London, E1 2BP
Tel 020 7791 9800
email advice@dls.org.uk

Disability Rights Commission
DRC Helpline, Freepost MID 02164, Stratford-upon-Avon, CV37 9HY
Tel 08457 622 633
email enquiry@drc-gb.org
Web www.drc-gb.org/drc/default.asp

Disability Unit in the Department for Work and Pensions
Disability Unit, Department for Work and Pensions, Level 6, Adelphi
Building, John Adams Street, London, WC2N 6HT
email enquiry-disability@dwp.gsi.gov.uk

National Association of Citizens Advice Bureaux (NACAB)
Myddelton House, 115-123 Pentonville Road, London N1 9LZ
Details of your nearest branch will be in the phone book, alternatively:
Tel 020 7833 2181
Web www.nacab.org.uk

The MS Trust

The MS Trust believes that current, accurate information is an essential tool for those who live with MS. We provide positive, realistic and up-to-date information to people with MS, their family, friends and the health and social care professionals who work with them.

The MS Trust promotes the role of MS specialist nurses and is the major provider of educational programmes for nurses and allied health professionals working within the field of MS. It also funds research into ways of better managing the symptoms of MS and campaigns to achieve a better deal for people with MS.

MS Trust
Spirella Building,
Bridge Road,
Letchworth Garden City,
Herts SG6 4ET
Tel: 01462 476700 Fax: 01462 476710
email:info@mstrust.org.uk Web: www.mstrust.org.uk
 

© 2003, MS Trust