How to Talk to Children About Your Myasthenia Gravis
Last updated: August 2023
Talking with your children about your myasthenia gravis (MG) can cause major anxiety. You do not know how your child will react. You might worry that they will get upset or they will not understand.
It might be tempting to protect your child from the overwhelming, even scary, truth. But children pick up on subtle signals that something is not right. It is better to be open and honest rather than hide the truth from them. Having a plan in place can help.1,2
Plan out what to say
Take some time to think about what you want to say to your child. Write it down if that helps. Many people find it useful to rehearse what to say. And practice out loud. Hearing yourself say the words is different from just thinking about them.2
Consider when you will share the news with your child. Pick a time when you will not be rushed and when they are least distracted.2
Share information in a clear way
Meet your child where they are. Use age-appropriate language and simple terms as much as possible. Talk about how this will affect their daily life. Above all, share information in a way that they can understand.1,2
You do not have to share every tiny detail about myasthenia gravis. And you can share information in stages. It does not have to be all at once. Think of this as a starting point that will lead to more discussions down the road.2
Let your child guide the conversation
Let your child guide how long or deep the conversation is. Some kids will hear and accept the initial information fairly readily. Others may become upset and cry. Some may become overwhelmed and leave the room.
Regardless of their responses, it is important for children to know that you understand how they feel and are available if they need to talk more. Check in with them later that day and in the days following to see how they are coping. Keep an open dialogue and be supportive.1-3
Be open to questions
It is likely that your child will have questions, especially if they are older. Welcome these questions. And if you do not know the answer, be honest with them.1-3
Teens, especially, may want to know about the overall prognosis and treatments. When discussing these, be truthful and optimistic without creating false hope or telling happy lies.3
Understand that reactions will vary
Everyone reacts to news about a loved one’s MG differently. Age and level of development play big roles.1
For instance, younger children might draw pictures to communicate how they feel about changes in their lives. Older children may have questions about how your treatment will impact their school and social schedules.
Be ready with extra support
Your child will need time and extra attention to get used to the new reality of your having MG. Be patient as they process this news.1,2
It is possible that your child may struggle with changes. They may display some behaviors that are out of character. Telling trusted adults about the situation will ensure that your child has a support network no matter when or where they have difficulties or need to talk. Consider telling your child’s school and other involved adults about the situation. These could be:2
- Parents of their close friends
For some children, speaking with a doctor or nurse who can explain procedures and treatment goals can help. A medical social worker can be an asset as well.2
Just as someone with MG needs open and honest communication with their doctor, children require the same thing with their family. Being open and honest will allow them to process the news and cope with their feelings.1-3
Talking about myasthenia gravis with children means discussing challenging facts with compassion and honesty. It also means presenting information in a way that a child can understand. These tips can get the dialogue started.
If you ever need additional support, talk with your doctor. They can guide you toward additional resources and people who can help your family cope.
My most frustrating MG symptom is _____.