Overall, says Dr. Santos, it’s crucial to find a time when you can focus on your child to have this conversation, which is not when you might be distracted by a call at work or when his football practice starts in five minutes, and try to schedule the conversation for a time when you think you’ll have the energy for it.
Tell them the truth about what MS is and isn’t.
« Honesty is the best policy, » Dr. Banwell says, which means putting your child’s biggest fear out of the way: make it very clear that you’re not dying. After that, be honest about what this diagnosis means to you and how your health and day-to-day functioning may change. « You can tell you might have balance issues and walking problems in the future, » Dr. Banwell says. Or you can take a page from Benjamin and say you might get messy trying to eat spaghetti to try and make the experience relatable.
For teens and older children, « really sit down and talk to them about what MS is and isn’t, » Dr. Banwell suggests. This includes having an honest conversation about what a relapse is – a flare-up of symptoms – and what you have decided to do about treatment.
If your child asks you a question, Dr. Banwell recommends that you be open with your answer, even if it’s « I don’t know. » This can include sensitive topics, such as saying that you may need a wheelchair in the future, if they ask for it. “You can say, ‘I’m going to tell you what I’ve been told and what I know. We will learn together,” says Dr. Banwell.
Don’t feel like you have to tell them everything.
Many adults prefer to learn as much as possible about a disease when they or a family member encounters it, says Dr. Banwell. In her experience, children and teenagers often don’t, she says, noting that many of her teenage patients say they don’t necessarily want to know everything about their condition.
« It’s important to say this is a serious diagnosis and to talk about what a relapse might be like – relapses are what children will see in years to come, » says Dr Banwell. « But when it comes to future neurodegenerative potential, that’s not necessarily the first thing you need to talk about. »
And, again, don’t feel like you have to have all the answers. « There’s nothing wrong with saying you don’t know the answer to something, » says Dr. Santos. « It’s better to say ‘I don’t know’ than to give the wrong answer. »
Explain what this might mean for them.
It’s normal to wonder if you’ll develop a health problem that a member of your family suffers from. Although the risk of developing MS is higher for siblings or children of an affected person than for the general population, it is still quite low. “If a parent has MS, the lifetime risk of their child having it is less than 5%,” says Dr. Banwell. « That means there’s a greater than 95% chance they won’t be affected. » She says it’s sometimes helpful to put it in this more positive way instead: « I have this condition, but there’s a 95% chance you’ll live without it. »
Share your feelings about your diagnosis (if you wish).
You’re probably feeling overwhelmed by the news of your diagnosis, and you can share it with your child, especially if they’re older or mature enough to understand what it means. « You can say, ‘I’m scared, I’m upset,' » says Dr. Banwell. What you don’t necessarily need to do is say, “Here’s all that can happen to me,” she says. It can be overwhelming. “Not all children have the emotional bandwidth to handle this,” Dr. Banwell points out.
