More MS news articles for February
about your MS to family, friends and colleagues
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
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
Questions to consider
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.
Getting the support you need from family and friends
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
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!
People you need to tell that you have MS
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.
Telling your employers and colleagues that you have MS
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
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
Tel 01462 476700
Helpline 0808 800 8000
Advisory, Conciliation and Arbitration Service (ACAS)
Brandon House, 180 Borough High Street, London SE1 1LW
Helpline 08457 47 47 47
Disability Law Service
Ground Floor, 39-45 Cavell Street, London, E1 2BP
Tel 020 7791 9800
Disability Rights Commission
DRC Helpline, Freepost MID 02164, Stratford-upon-Avon, CV37 9HY
Tel 08457 622 633
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
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
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.
Letchworth Garden City,
Herts SG6 4ET
Tel: 01462 476700 Fax: 01462 476710
email:email@example.com Web: www.mstrust.org.uk
© 2003, MS Trust