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Talking To Children About MS
Children of a parent with MS may have endless questions. It is very important to be open and honest with the child. Communication is the key in helping to eliminate any fears they may have. You may not always have the answer, but you can search for them together by reading a book, watching a video, searching web sites, etc. One of the first things a parent needs to do is take the child’s age into consideration. A pre-adolescent (4-12) often sees the world in black and white. It can be hard for them to understand why you have good and bad days, why you must use a cane, why you need daily naps, and so on. A story can help when telling a child what MS is. For example, explain that all people have nerves that act like wires in their bodies that are connected to the brain. In the body of someone with MS, the wires don’t always work as they should. Sometimes, they don’t send the proper messages to different parts of the body. So, for example, that is why you sometimes have trouble walking.

The adolescent child (12-18) is usually more mature and can see the “big picture” better. Regardless of age, there is no need to use big medical words or overwhelm them with information they may find difficult to understand.

When reading the following, consider the age and maturity of the child. The information and suggestions may or may not be appropriate for every child.

One very common question is: “Are you going to die?” Explain that although this may cause some limitations to your lifestyle, you aren’t going to die. Many children are afraid they will get MS too. Tell them that it is unlikely because it is not passed from parents to children. However, it is possible for more than one family member to have MS (remember, you are being honest).

A child who has a parent with MS often experiences a different lifestyle than others. They are frequently called upon to do more chores. This may take time away from their school activities or social life. There are times when they may have to deal emotionally with a parent forgetting things, related financial burdens, a vacation that has to be cancelled due to an exacerbation, etc.

Remember, you too may experience feelings of guilt or anger because your family must cancel plans due to your MS related problems. Talk with your children and explain that plans must be conditional on how you are feeling at that time. This will enable the child to better understand the situation and help eliminate your guilt. Be cautious of openly expressing any anger you may have regarding MS. It can unnecessarily confuse and alarm children, especially younger ones.

There are many emotions your child may experience when told of your illness. Anger, embarrassment, fear and depression are a few of the more common reactions. Be sure to watch for changes in your child’s behavior. You may notice that he or she seems to be growing up too fast. This could be due to changes in family roles and responsibilities. Sometimes when children learn that a parent has MS, they begin to behave badly, do poorly in school or have trouble sleeping. These conditions are not considered abnormal in the short term, but professional help may be necessary if behavior problems become chronic. Remember, support groups and counselors can be very valuable to you and your family when situations become overly difficult. Explain that you can not be certain how MS will affect you in the future and that it is different for each person. Encourage your child to explore and explain their feelings. Keep the communication lines open and include your child in family discussions and decisions. This will build trust, strength and a sense of belonging.