A chronic and unpredictable disease such as multiple sclerosis has a significant impact not only on you but also on your loved ones. You are not the only one who suffers. Your partner and children must also cope with the disease and the changes it may bring.
If you have little or no physical disability, your family life may not change at all. But there may be times when you will need to change your family activities, choosing ones that are less physically demanding and time-consuming.
For Mimi Mosher, a person with primary progressive MS, clarity first came
when she lost her vision.
Her eyesight steadily eroded by multiple sclerosis, Mimi now lived in a
near-constant dusk. The realization came at a scary time. “I was driving. I
thought, I can’t do this anymore. I had to pull off the road and let my friend
drive,” says Mimi.
Until then, Mimi had been living “in a deep state of denial” about her
advancing symptoms. As her primary progressive MS forced her to hand over her
The most important thing to do is to communicate openly about your emotions and about issues related to MS. It is especially important for you to explain to your loved ones how MS affects you. Some symptoms of MS are not apparent to others, and family members depend on you to tell them when a problem occurs.
Children of Those With Multiple Sclerosis
Children are often worried about you and fear you will become disabled or will die. Frustration may arise when you are unable to keep up with them or to make commitments the way other parents can. Some children may also feel ashamed and embarrassed to go out in public with a parent who requires assistance with a cane or uses a wheelchair. The best way to handle these concerns is to talk about them. Ask your children questions about what they are thinking. Try to alleviate some of their concerns.
What to Tell Your Children About Multiple Sclerosis
Talking openly with your children about multiple sclerosis helps relieve their anxiety about your health. Children of all ages are very intuitive and know when something is different or has changed. Talking with your child opens the lines of communication and helps to reduce fear and stress.
When parents are reluctant to talk to their children about the disease, kids misinterpret silence as an indication that the situation is so bad that it cannot be discussed. Parents who can talk with their children about MS convey a message of trust, confidence, and strength.
When responding to questions or concerns, take into consideration your child's age and maturity level, and don't overwhelm them with information they cannot understand. If you have more than one child, it may be helpful to talk to them individually so that you can tailor your discussion to their level of understanding.
You may want to ask them how they would like to learn about MS -- reading a book alone or with you, watching a video, or going with you to a doctor's visit.
Children's Reactions to Multiple Sclerosis
All of the following emotions are normal reactions to a parent's diagnosis of multiple sclerosis:
These emotions may lead to changes in your child's behavior. Here are some signs to watch for:
Increased concern with their own body and wellness
Difficulty maintaining close friendships
Higher anxiety and stress
False maturity ("growing up too quickly")
Behaving badly in public
Lying to friends about the parent's illness
Regressive behavior (acting younger)
Waiting until parents are tired at the end of day to ask for things (such as help with homework)
Poor performance in school
Nightmares, bed-wetting, and trouble falling asleep.
Beyond these behaviors, which in moderation are considered normal, your child may have additional difficulty coping with your illness. In some cases, you may want to seek professional help. Some warning signs of unhealthy behavior are:
Severe or chronic behavior problems
Problems with sleeping and nightmares consistently for over a month
Loss of appetite or sudden increase of appetite
Loss of interest in schoolwork and extracurricular activities