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Do I tell family, friends and employers and what do I tell them?

Deciding whether or not to tell people that you have MS is a very personal decision. For many people with MS the disease is not clearly obvious, so there is a choice whether to disclose the diagnosis or not. If you need practical assistance, either daily or occasionally, this may dictate revealing to those close to you that you have MS. Your decision may depend on your relationships with others and how you think that they will react to the news.

Families

When you first learn that you have MS you may feel able to discuss it with your family. For many people, it is a relief to be able to talk about it. Before you discuss your diagnosis with members of your family, you need to consider how you think that they will react. Family members generally are supportive. However, they may also be upset by the news, especially if they don't know anything about MS. It may be helpful to have informational pamphlets available to help talk about MS and how it affects you, to ensure that people understand the disease. You may decide not to tell your family, or to tell only some of your relations if you think that is could be detrimental to your relationships or lead to unwanted disclosure of your condition.

Telling young children

It is probably not useful to make a formal announcement about MS to very young children, but it is important that their questions are answered as and when they occur. Instinctively children are aware that something is wrong and that you are worried. You need to be aware of this and understand that their behaviour can sometimes be disturbed. The truth is hardly ever as frightening as their fears. A number of the national MS societies have booklets for children available that you may find helpful.

Telling older children

Older children and adolescents need to be informed but may require a more careful approach. Although they can appear outwardly calm and possibly even indifferent, they are most likely very concerned. Their anxiety can be helped by information. Their concerns need to be addressed as they arise and they need to know that you are willing to speak with them as issues come up. The opportunity to read selected literature from the national MS society may be helpful.

Adolescents feel that they should be treated as adults, and if they are not allowed to play a responsible part in a family problem they can feel both hurt and resentful, and as a result may start behaving in a destructive way. If, however, their cooperation is encouraged they can become surprisingly mature and a source of strength. Trying to keep your problem to yourself will not spare them any anxiety.

Telling parents

Telling parents of your diagnosis can also be difficult. It is very hard for parents to accept their child's diagnosis, and it is extremely important to be sensitive to their feelings and needs. Mothers, especially, will probably be extremely protective and many parents will feel that they are to blame.

Where a dependent child or adolescent has MS

The parents of a child or adolescent with MS face enormous responsibility as to what to tell the young person about the disease and how much information and responsibility should be placed on their child. Many young people with MS are minimally affected initially and parents, both for their own sake and for the young person, resist public exposure, when there may be many years before the effects are obvious. During this time they hope the child/adolescent can mature into an adult, complete an education, set out on a career and build relationships.

Usual counselling advice is based on the idea that all people diagnosed with MS are adults and, though not common, there are older children and adolescents who develop MS. The notion of immediate and full revelation of the nature of MS is a worthwhile generality that comes under some question in this particular cluster of persons with MS.

In the case of children under fifteen, particularly with minor symptoms and minimal disability, there is some argument for withholding the full nature and prospect of the disease. Obviously the child is aware there is something wrong, which comes and goes and often requires medical attention - but the parents can bear the responsibility of decisions and involvement with medical personnel, while the child continues to lead a "normal" existence.

In the case of adolescents (fifteen years and older) they are old enough to be involved in the reality of the disease and the decisions which their parents make regarding treatment, education etc. Nevertheless, it is important to remember that all adolescents are emotionally labile and have fragile self-images, MS being an additional burden for them to cope with.

Employers

The decision over whether to tell your employer could have an impact on your work. It may ensure more support or, in some cases, unfairly affect your career prospects. The legal requirements in relation to disclosure vary from country to country and you should check with your national MS society.

Advantages of disclosure

1. Telling of your diagnosis can bring peace of mind. Many people with MS report that 'hiding is more stressful than telling'. Disclosure also makes it easier, if the need arises, to discuss any workplace adaptations that might be necessary.


2. Having 'cleared the air', you will have an understanding of others' reaction to the fact that you have MS and of how you are likely to be perceived and treated by colleagues. You will be able to deal far more honestly with people.


3. You will be released from the worry that a past employer or reference might inadvertently reveal the fact that you have a disability.


4. Your apprehension about any proposed medical examination will be reduced, because you will know that the employer, insurance company and other relevant parties are aware of your MS before the examination.


5. Having told your employer that you have MS, you would find it much easier to educate him/her and colleagues regarding the true nature of the disease. As well, this allows you to discuss with your employer any future changes in your condition.

Disadvantages of disclosure

1. Fear of being discriminated against because of having MS, eg being denied promotion, training etc.


2. Fear of reaction of colleagues and others.


3. Fear of losing your job or not being offered a job (particularly if it has happened to you before).


4. Fear that, if something goes wrong in your job, it will be blamed on your disability.

What do I tell people about having MS?

Before you tell people that you have MS, you need to think about what they need to know. Many people will have no experience with MS or, on the other hand, know of someone with MS whose experience of the disease may be very different to yours. Your community includes people who are intimately connected to you and those whom you know casually. Your relatives, friends and employer naturally will want to know what has happened to you, especially if you have visible symptoms. They may also want to know what they can do to help. If you are honest with those close to you and let them know you will accept help when you need it, you will allay their worries and probably find them very supportive.

You can start with a simple explanation of MS and how it is affecting you at this time, so that people are aware of any practical support which you may need without imagining that your MS is any worse than it is. If you have a standard description which you use, it can help to ensure that you feel confident giving the information and that the details you give are consistent. Certain general issues may need to be quickly refuted - for many people there are stereotypes which surround MS (eg that everyone with MS ends up in a wheelchair) or misunderstandings (eg that MS is contagious). MS societies have pamphlets and brochures that will make the task easier. Casual acquaintances can be told if it comes up in conversation or if you wish. In this case there is probably no need for formal explanation.