What is the best way to explain MS to my children who have anxieties of their own?

This is a big question as it will very much depend on the child, their age and what their anxieties are. I fully believe you will instinctively know how much they need to know – some children will want or need all the details, others may not. Most children will ask more questions in their own time. Be confident in yourself and your own judgements on when is the best time to speak to your child. 

Depending on how you are impacted by MS, will also determine how much to share. Visible symptoms are more obvious but the invisible symptoms may need explaining a bit more, like fatigue for example.  

Research shows that speaking to children about MS is helpful for them. It is always best to be honest and reassuring. Keeping it simple in the beginning is a good start. Try not to be too technical. For older children, maybe signpost them to reputable websites such as MS-UK, MS Trust and the MS Society. But ‘googling’ may not always give them accurate information. 

If your child experiences anxiety, it may be best to speak with their school before you explain MS. Could it be the school are already involved in how to help your child manage their anxiety? Most schools will have a pastoral team, or perhaps an emotional and wellbeing support, could it be helpful to talk to your child with them present?   

There are some useful resources online on talking to your children about your diagnosis.  

The MS Trust have an excellent booklet titled ‘Talking with your kids about MS’  

They also do a kids’ guide to MS – written for children from six to ten years old. It uses colourful characters to help engage the child. 

• For older children, Digesting Science is a great resource. This is based on more scientific information but communicated in a simple way. Set up by Barts MS Research Team and Queen Mary University Hospital, there is an interactive human body to show the areas that can be impacted and how the messages get interrupted. This may be a really good visual for some children. 

Ensuring your child knows they can always ask you questions no matter how big or small will be really reassuring. The MS-UK Helpline is available Monday to Friday, 10am to 4pm. The helpline are here to listen and provide information and emotional support when needed.