Muscular Dystrophy: Telling a Child the Truth About His/Her Condition

Muscular dystrophy is a category of muscle diseases that cause progressive weakness and loss of muscle mass.  Muscular dystrophy (MD) is either inherited or can be due to a genetic mutation. Kids with MD usually follow a normal pattern of growth development in the first few years of their lives, but the signs and symptoms of MD gradually take place as time goes by. Hence, it would be hard for parents to know that their beloved child has a muscular dystrophy disorder, or whether or not their child inherited their condition.

As a parent, it would be difficult, to be honest to your child about their condition. It is also really hard to ask people how to tell a child that he or she has muscular dystrophy, especially that MD usually make the child unable to walk and have a short lifespan. Parents often tend to let their child live a normal life, and will try not to disclose the illness as long as possible. However, it is still advisable to talk about the condition to your child as soon as possible to have a better understanding. After all, it is them who will be greatly affected by the disease.

Below are some tips and ways to tell your child that he or she has muscular dystrophy.

Be honest

This is the first step, and probably the hardest. Who would like to know how to tell a child that he or she has muscular dystrophy? Who would want to tell their child that he or she will not be able to walk in the future? Or worse, that he or she will have a relatively short lifespan? No parent really wants to tell their child about that, but being honest with your child is the best way for them to understand why they are experiencing such things and why they are different.

It is never easy to be honest with your child when we talk about illnesses or diseases or anything that can hinder them to live a normal life, but being honest and talking to your child would be a very good choice for them also to understand the situation. Doing so will make the treatment process easier and can elicit cooperation from your child. It would be difficult at first, but the earlier you disclose the topic, the more progress will be made. This brings us to our next tip.

Start early

If you have already decided to be honest to your child, be sure that it is not yet too late. Start as early as possible on explaining to him or her about his or her condition. Bullying is very rampant in schools nowadays, especially with the presence of social media. Before your child will become a victim of bullying and start hearing bad things about his or her condition, it would be best that they already understand their differences from the other kids.

Talking to your children as early as possible makes them understand more as time goes by. It will also lead them to be more open-minded about the condition. When in doubt, whether or not your child is too young to know the condition, you can consult your child’s doctor on the perfect time to disclose his or her condition.

Don’t wait until your child asks

If your child already asks you what is wrong with him or her and why he or she is suffering, it means that the child has already experienced unfortunate circumstances such as bullying, or worse, has already been able to distinguish that he or she is different from other children. Most likely, children with MD would feel hurt and betrayed if they found out about their condition on their own, which could result in asking why you his or her parents never explained it personally.

According to research, children cope best with the realities of muscular dystrophy if they are given honest and age-appropriate information about their condition. Of course, your child can ask questions which need to be answered honestly, but it should be you who will open up about it first. You don’t have to be all out honest in one talk; you can gradually explain the condition to them in a manner that they best understand.

Discussing illness with your child

Discussing an illness is a lifelong process, most especially to kids.  It is never easy to talk about illnesses and their disabilities, but making them understand it all the time is the best way for them to cope with the differences that they have. Even if children have muscular dystrophy, they need to believe that their lives are filled with potential. Children learn from their parents, and if you let your children understand everything about his or her condition, they will eventually learn it easily, of course, through your help.

Use the Internet

The Internet, if used wisely, is such a great tool for everything we need, this includes information about diseases. Aside from professional explanation, you can also find some forums on the internet about how to tell a child that he or she has muscular dystrophy, or even about the disease itself. Reading forums from other parents’ struggles and tips can help you gain more knowledge when talking to your child.

Work with schools and communities

Even if your child and your family understand the situation and why your child is different, it might not be the case with other children. The least that you can do is to promote a community wherein people are well-informed about muscular dystrophy. In the long run, this will make your neighborhood (including the children whom your child interacts every day) knowledgeable about your child’s condition. This can also make the school a positive environment for your child, especially since school is supposed to be the second home of every child.

According to  a Schonfeld booklet, “Having someone speak to the class about DMD and answer students’ questions allows peers to ask their questions directly, rather than indirectly through teasing.”

Tell the correct and specific name of the condition

Although muscular dystrophy is a little bit difficult for children, telling them the correct name will be helpful for them to be familiar with it. There are various types of muscular dystrophy, so might as well tell your child the specific name.

Tell them it’s not their fault

Make sure you explain to your child that their condition is not because of something they did, or anyone did. Don’t forget to tell your child that their illness cannot be spread to other people. Again, children are very sensitive, and they are very prone to misunderstandings, so it is really appropriate to make them understand that whatever they experience is not the result of something they did.

More information as they age

Give them more information as they age.  A child reaches different stages of development, and the information you shared with them should increase too. Just always make sure that it is age-appropriate information.

Prepare them for adult services   

The more they age, the more they will be involved in their treatment and treatment decisions. It is best to prepare them through proper transitioning for them to be prepared for further decision making. It is always hard to tell a child that he or she has muscular dystrophy, but with proper knowledge and proper guidance from the people around them, it would be easier for them to accept their condition. Muscular dystrophy is not something that can be easily treated or something that can be easily neglected just because you want your child to live a normal life; it is always best to be knowledgeable.