Explaining Duchenne muscular dystrophy to others: how to make it easier
Telling your friends and family about Duchenne muscular dystrophy (DMD) can be daunting, but it is a vital part of the coping process. Once people close to you know, they can serve as great pillars of support.
While there is no right or wrong way to break the news, taking these five steps may help make it a little easier:
Decide who to tell1–3
While it is entirely up to you who you tell – or do not tell – it is usually a good idea to be open and honest with your loved ones about DMD.
In general, both adults and children can better deal with a situation if they feel they understand it. That is why it is important to provide the right amount of information about DMD and be willing to explain what it all means.
Start with the basics1–3
A good rule of thumb is to start by telling people what you feel they will be able to understand and accept.
- When talking to adults, go into as much detail as you feel is appropriate. You might like to have some information on hand – this can help you if you get stuck for what to say
- When talking to children, it is best to provide simple, age-appropriate explanations to help them grasp what is happening
Download our age-appropriate books to help children learn about DMD.
It is important to stress that DMD is nobody’s fault. Explain that DMD is a disease that people are born with. Reassure your loved ones that nothing anyone did or did not do could have caused DMD.
Explain what it is like to live with DMD1
Explain how DMD affects your child or young person’s everyday life. This could include physical challenges, medical treatments and changes to expect for the future.
Answer questions openly and honestly1–3
People may ask questions about DMD – it shows that they are interested and concerned about your child or young person. Questions are an opportunity to deal with any worries the person has together – with information and support.
Try to create an environment where people feel safe asking questions and sharing feelings. This is particularly important for children, as questions enable you to correct misunderstandings and help them express feelings.
Let people deal with the news in their own way1,3
You will probably find that different people react to the news in different ways. Some may want lots of information while others will not want to hear about the ‘medical’ side of DMD. Some may find it difficult to discuss feelings while others may not be able to stop. Some may want to surround themselves with people while others may wish to be alone.
Communicate what feels right for you and/or your loved one, and listen to what others tell you works for them.
Use these tips to help break the news about DMD
1. Parent Project Muscular Dystrophy. Adjusting to the diagnosis. Available at https://www.parentprojectmd.org/care/for-families/for-newly-diagnosed/adjusting-to-the-diagnosis/ [last accessed March 2021].
2. Parent Project Muscular Dystrophy. Psychology of Duchenne muscular dystrophy. Available at https://www.parentprojectmd.org/wp-content/uploads/2018/04/Psychology_of_Duchenne.pdf [last accessed March 2021].
3. Poysky J. Talking about neuromuscular disorders. Available at https://www.parentprojectmd.org/wp-content/uploads/2018/04/Talking_About_Duchenne_Poysky.pdf [last accessed March 2021].