Carer support space

Explaining Duchenne muscular dystrophy to others

Telling your friends and family about 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.

Decide who to tell^1—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 basics^1—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

Answer questions openly and honestly^1—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 way^1,3
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.

Getting the right support

A diagnosis of DMD can turn your world upside down, but you do not have to go through it alone. Family, friends, professionals and online communities can all serve as great pillars of support and comfort to fall back on in difficult times.

Types of support

There are two types of personal support networks and you should make use of both:
Informal support networks⁴
People who help out in a practical way and are there for you when you need them, like friends and family members.

Formal support networks^4,5
Support from healthcare professionals, patient groups and professional organisations.

Having a strong network of supportive people that you can trust and fall back on means that you can:

• Get help with the practical aspects of life (for example, medications, childcare, schools, home adjustments, transportation and finances)⁴
• Have access to expert knowledge from healthcare professionals⁵
• Join an online community so you can talk, get advice and share stories with families who are experiencing similar things to you⁴
• Get reassurance and support at times when you might feel hopeless or alone⁴

How to build and strengthen your support network

It can be easy – albeit unintentionally – to give less time to your friends and other loved ones after a DMD diagnosis. You may find yourself busy taking care of your family, your priorities may change or you may feel too emotionally drained to see other people. However, making time to maintain your support network is critical. Try these steps to strengthen your network:

Touch base often^4,6
Make an effort to catch up with family and friends on a regular basis. This does not always have to be face-to-face – a simple phone call or email will suffice.
Life hack: If you are short on time, try writing out a ‘template’ email that contains all your family news. Later, you can personalise the content depending on who you are writing to.

Allow people to help^4,6
It can be hard to ask for or accept support, but loved ones, friends, co-workers and neighbours often want to help. Let them know what you need, as well as how and when they can help.
Life hack: Make a tick list of things that need doing. If someone asks to help, show them the list and let them choose what they can take off your hands.

Share what is on your mind⁴
Try to be open and honest about the way you are feeling and what you are going through. While it can be scary to say what is on your mind, it is also a pathway to a deeper connection with others.

Make time⁴
Meeting with family and friends is a great way of taking a break and clearing your head. That is why it is important to make it a priority and not just an afterthought when you have free time.
Life hack: Try using your phone or calendar to make social event planning part of your schedule. This way, your phone will automatically send you reminders, which will encourage you to make plans.

Show appreciation⁴
It is important to remind your loved ones how important they are to you and how much you value their support. Make sure to express how you feel, and do things that show how well you know and care for them.
Life hack: When showing your gratitude, make sure to focus on the other person. Do something that they would perceive as caring. This could be treating them to lunch or a quick cup of coffee, writing a thank-you note, giving them an inspirational book or simply asking how they are.