By Dr Annette Carruthers
A diagnosis of multiple sclerosis (MS) is a major life-changing event for any parent. Sometimes the diagnosis is made after a sudden onset of illness but more often there may have been some vague symptoms for a period of time which have not only affected you but also those around you.
Children of all ages will quickly pick up that something is wrong and may over-estimate what is happening. If you have been diagnosed with MS it is best that your children hear the information from you. It is important to tell them before they hear it from someone else so as not to damage trust.
Firstly, assemble information for yourself so that you are in a position to answer questions with some confidence. Most people when diagnosed with MS are relatively well and likely to remain that way for years, so it helps to be optimistic as your family begins the MS journey.
It won’t hurt to rehearse what you want to say and to then find the best place and time for the conversation. It is best to choose a time towards the end of the day, when activities are over, when there are no distractions or time pressures and take the opportunity to discuss as a family if possible. Your child will then have some time to process the information before sleep.
The nature of the conversation will depend on the age, maturity and resilience of your child. It is recommended to keep the language simple, the words “multiple sclerosis” are difficult to pronounce for younger people and “MS” may be better.
After a brief opening statement such as “We have something we need to discuss” or “You know how I went to the hospital today”, move quickly to your key announcement. Ensure eye contact, use language your child will understand and consider giving small bits of information at the time. Allow time for your children to ask questions. Always be honest with them. Your child will process the information over time and younger children may even seem to ask inappropriate questions eg “can we have ice cream with tea.” Treat all questions respectfully, no matter how trivial.
Most children and particularly teenagers will be concerned with how MS will affect their own lives. Don’t be upset by this or mistake it for being unaffected or too young to understand, it is perfectly normal. Talk about all the things that will remain the same and respond to their need to feel secure.
Explore what your own child knows about MS. Older children may be aware of someone else with the condition, after all over 25,600 people in Australia are affected by MS.
Be prepared for questions such as “Will I catch it”, “Is it my fault” or “How do people get it.” There are a range of information materials listed below which can provide further written and electronic information for your child in friendly formats.
Try to spend some more time later in the evening before sleep to see if they have more questions or need reassurance. Cuddles and quiet moments together are reassuring in uncertain times. This gives your child time to process the information before sharing it with others.
Subsequent questions can be awkward and come at inconvenient times. When your child and particularly teenagers are ready to talk, that opportunity is valuable for you both. Prioritise giving them your full attention when such times arise. If you don’t know the answer to a question say so and talk about how you might find out.
The concept of uncertainty is a challenging one. You don’t know how your condition will progress and you certainly shouldn’t be catastrophic in explaining to your children. It is very likely that new and emerging treatment strategies coming from research, will make a big difference in your journey. Later on, you might even want to talk about how your family might get involved to make a difference such as raising funds for research.
Be aware that how you deal with grief is an example for your child. Some teariness in the initial discussion is fine, but try to stay calm and avoid being repeatedly upset in front of your child.
Observe your child’s response. An excessively quiet child may be internalising their emotions. Younger children may exhibit behaviour changes such as tantrums, bad dreams, bed-wetting and sleep disturbance. Older children may react with depression and anxiety symptoms. If these symptoms are more than transient, discuss with your GP and consider whether involvement of a psychologist may help.
Consider the support systems that may be helpful. Once you have disclosed to your family, it may be worth engaging your child’s teacher or best friend’s parent to also be supportive to your child and to make you aware of any unusual behaviour.
Reassure your children as best you can and try to end conversations on a positive note. There is, after all, so much that can keep you well these days. There are lifestyle changes that you and the family can make, that can improve your symptoms. The whole family can benefit from more regular exercise, adequate vitamin D exposure and a low-saturated fat healthy diet. Meditation techniques can be helpful for everyone and contribute to a calmer and happier household. The re-evaluation of your life and what is important can be beneficial for all.
Child Friendly Resources