Family and MS

The decision to tell other people that you are suffering from MS is a very personal one. For many people with MS, the disease has no obvious manifestations, allowing a choice in terms of disclosure of diagnosis. If you need specialized assistance either daily or occasionally it is best to let people close to you that you are suffering from MS. Your decision depends on relationships with others and how you think they will react on hearing the news. If you suffer from MS and you are thinking about sharing it to other people, you have to adapt what follows to your circumstances before making any decision.

Family:

The fact that they can talk about it is a relief for many people. Before discussing the diagnosis with your family need to think about how they react. Family members are generally ready to help. However it can be sad on hearing the news, especially if they know nothing about MS. To make sure that people understand what MS is, there are informational brochures that help you talk about the disease and how is is influencing you. You can take the decision to remain silent or to inform the family or only a few known people if you think this would be detrimental to your relationships or it could lead to unwanted disclosure of your disease.

Informing younger children:

Probably for young children a formal tone announcement about MS on not suitable , but it is important to receive an answer to their questions. Children instinctively feel that something is wrong and that you are worried. You should be aware of this fact and understand that it may impact on their behavior.

Informing older children :

Older children and adolescents must be informed but it takes a careful approach to the problem. They are very worried even though on the surface may seem calm and even indifferent. This anxiety can be removed using information. Their concerns must be addressed as they arise and children should be aware that you are ready to discuss the problems arising in the process. Teens feel that they should be treated like adults, and if not allowed to play an important role in the family matters, there is the possibility that they feel hurt and frustrated and therefore to behave in an unpleasant way. If their cooperation is encouraged, they will act in a surprising mature manner and can become a support for the patient. Not sharing the problem with them will not relieve their anxiety.

Informing parents:

Informing parents can be difficult in it's turn. Parents are finding it very difficult to accept their child's diagnosis and it is therefore important to pay attention to their feelings and needs. Mothers, for example, will be very protective and many parents will feel that they are to blame.

When one child or a teenager is suffering from MS:

Parents of a child or a teenager have a great responsibility on what they tell him about the disease and about the volume of information and responsibilities submitted to the child. Many young people with MS are affected to a small extent at first, but avoid contact with the public to spare themselves and the young, though many years will pass until the disease effects will be obvious. The advisory's recommendations are based on the premise that people diagnosed with MS are adults but , though not regularly, older children and teenagers are suffering from this disease. The idea of presenting the general aspects of the disease is questionable when referring to this sector of the sick population. For adolescents (over fifteen years), they are sufficiently mature to engage in the realities of illness and parents' decisions on treatment and education. However it is important to remember that all teenagers are emotionally sensitive and have very fragile self image, MS is still a burden for them.

Employer:

The decision to tell or not to the employer may have a direct impact on your work. May facilitate additional support or the contrary, it will seriously affect your career. Multiple Sclerosis Society in Romania is aware that employers do not entirely understand MS and may react in a wrong way because of ignorance.

Here are some of the advantages and disadvantages of informing the employer:

The benefits of informing:

Exposure diagnosis can calm you. Many people with MS say that concealing the diagnosis is more tiring than his exposure? Exposure may ease further discussions on possible changes needed where you work, when situation requires it .
With a clear situation, you will better understand the reactions of others that suffer from MS, but also how you are perceived and treated by coworkers. You will be able to behave in a more honest manner with others.
You will not have to worry about the fact that a former colleague or a former employer will reveal that you have a disability.
You will be relaxed before a medical examination because you know the employer, insurance company and other organizations are aware that suffer from MS.
After you've told the employer that you suffer from MS it will be easier to explain your colleagues the true aspects of the disease. It will also allow in the future to discuss with the employer of any changes that may occur to you.

Disadvantages of informing:

Fear of discrimination on grounds as suffering from MS, the lack of future promoting or participating in training courses.
The fear of the reactions of colleagues and others.
Fear of loss of job or not get one (especially if this has happened to you and before).
Fear of accusation of disability in case something goes as it should in your place of work.

What do I tellpeople about life with MS?

Before telling people that you have MS you need to think what they need to know. Many people came into contact with MS or, on the other hand, maybe know someone who suffers from MS, with symptoms quite different from yours. Your community includes people who are very close and people you know occasionally. Relatives, friends and your employer will want to know what problems you are facing especially if you have visible symptoms. If you are honest with your close ones and you make them understand that you will call upon their help when you need, you will appease their concerns and you can rely on them in the future.

You can start with a simple explanation of MS and how it will affect health in time, to make them aware of the support you need without let them believe that MS is more severe than in reality. In order to feel confident in offering information and details about the disease is better to have a standardized description which to use. There are some general issues to be controlled, for many people there are stereotypes of MS (eg, anyone suffering from MS in a wheelchair reach) or misunderstandings (MS is contagious). SSMR has leaflets and brochures that will help.

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