Don't Sugar-coat MS: Keep Your Kids in the Loop

Chronic illness impacts the entire family. It might be scary to share difficult news with children, but it can be much scarier for them if they’re kept in the dark.

Kat Naish says open communication is a must - but make sure it stays age-appropriate. Being honest will ease fears and reassure your children about the situation. Here are Kat's top tips for honest communication.

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Receiving a diagnosis or living with an incurable disease like multiple sclerosis (MS) is frightening. There are so many what-ifs and potential scary outcomes.

Naturally, we want to protect our children from worrying situations. Especially in the beginning, when our symptoms are often invisible. It's all too easy to hide that something's wrong. You might not want to burden them with frightening news about your illness, but is that possible? Or even a good idea?

Personally, I don't think so. Children will know something is up. After all, they constantly look to us to learn. They will notice hushed conversations, tensions, mood changes... stuff they might not understand.

And they will find out eventually, so we must ensure our children have all the facts so they don't stress or think it's their fault.

Of course, you know your child best. A lot depends on their age, personality, and how you approach problems in your family dynamic. But if the truth is tailored to their age and level of understanding, it will be more reassuring than unsettling.

Honesty is the best policy

When talking to my son about MS, I've always been honest. When he asks questions, I try to answer them as best I can. This means being open about questions you don’t know the answer to. Admitting you don't know, and finding the solution together, reinforces your sincerity. It also reassures your child that asking tricky questions won't upset you.

Honesty opens up a discussion. If your kids are older, it will often be a relief to talk openly and help them be sincere about their worries or feelings. They will take your lead and will go on to become well-rounded individuals in their future lives.

Package it in a child-friendly way

My son was five when I was first diagnosed, so I didn't give the condition a particular name at first. A simple "Mummy gets tired" was all he needed for a while.

Nowadays, I've taken the lead in giving him more information as time passes. Using the abbreviation "MS" was also less frightening for him than big, scary terms like "multiple sclerosis".

He’s eleven now. He knows why I struggle to walk sometimes, why I have hospital appointments, and what I do to make myself feel better. He understands that having MS can be challenging. However, at the same time, he's learning to be resilient and not give up when things get complicated.

Show them how they can help

Being of help can be very empowering regardless of how old they are. Young children will love helping with small tasks. My son always goes upstairs to fetch me things I've forgotten because he knows how much energy it saves me.

Older children will feel glad to be able to support you physically and emotionally. You don't need to hide it when you're having a bad day. We always say it's okay not to be okay. When kids grow up with an ill parent, they may feel pressured to be invulnerable or "very brave." In my opinion, this expectation may be far more damaging to children in the long term than a few minutes of expressing their worries and fears.

So, help them understand that providing a listening ear can hugely support someone in distress. In turn, they'll recognise their own negative emotions and feel comfortable talking them over with others.

Get healthy family members involved

Sometimes children will want to turn to someone else for support. It might feel more comfortable for them to direct more frank questions to someone without the diagnosis.

Please don't take it personally. It's natural and shows their curiosity. Keeping the conversation going and evolving is the more important than anyone's ego.

The takeaway

When discussing a diagnosis with your children, it's best to have an open, age-appropriate conversation from the start. More questions will arise as your kids grow older and digest the information, so prepare yourself. Kids are often more resilient and intelligent than we give them credit for.

Of course, you can't be expected to have all the answers. Still, including the entire family in finding reasons or solutions will show your children that you trust them and value their input. Likewise, your kids will gain the confidence to communicate and solve future problems in their personal lives.

Some good resources to help you talk about MS

From the MS Society Talking to children | Multiple Sclerosis Society UK (mssociety.org.uk)

From the MS Trust Telling children about MS: when, how and why? (mstrust.org.uk)