How does MS affect your child?
The daily challenges of multiple sclerosis are well known by everyone who is struggling to cope with the disease. MS is a condition of uncertainty: Will I have symptoms in the morning? Will I be able to go to work tomorrow? Will I get worse? Will I be able to take care of my family? And a parent with MS has the added worry: how is my MS affecting my child?
There are literally hundreds of studies that have posed this question in various ways and some of the key findings from 18 studies have been recently reviewed by Canadian researchers (Razaz and colleagues. BMC Neurol 2014;14:107; free full text at www.ncbi.nlm.nih.gov/pmc/articles/PMC4040480/pdf/1471-2377-14-107.pdf). As you might expect, such a grab-bag of studies will come to all sorts of conclusions, some of them contradictory. But some themes do emerge about how MS can affect children and teens.
1. Children need to understand what’s going on. Your home is your children’s universe and they’re very sensitive to any changes or undercurrents. Unexplained trips to the hospital, missing a school play, being too tired to cook dinner, whispered discussions with your spouse – any number of signs can set off alarm bells in a child’s mind. If you don’t talk about it, or if you don’t address their concerns, their marvellous imaginations will fill in the blanks – maybe with monsters that are worse than the reality. So they need to understand enough so that MS is real, but not so much that they take on all the burden of worrying about the future. Explaining about MS won’t be about total honesty (for who knows the totality of what MS means). It’s about providing them with the amount and type of information (appropriate to their age) so that they can understand enough to enable them cope a little better. When you tell them, what you say and how you say it will depend on your instincts and wisdom as a parent. Try to address their questions and concerns to the best of your ability so they aren’t left to worry and puzzle things out for themselves. Don’t worry that the conversation is a success or a failure – it’s a process, an ongoing dialogue. In the weeks and months ahead, there will countless opportunities to correct any misperceptions they have, or to talk about the thoughts that have been running through their heads.
2. Cut the monsters down to size. MS can be very threatening to a child: it’s unknown, it’s lurking in the shadows and it wants to hurt you (and them). But they need to understand what MS isn’t. It isn’t going to kill you. It won’t take you away and they’ll never see you again. The symptoms may not always let you do what you’d like, but that doesn’t mean you don’t love them anymore. Yes, there will be situations and tough times. And yes, things won’t always be “normal”. But you will get through it as a family. This sense of being in it together is important because some studies have found that children feel their MS family isn’t as cohesive as other families. Illness can be very isolating; there’s a natural tendency for a person to withdraw and lick their wounds. The challenge will be to avoid having your child feel that you’re in one room dealing with your illness, and they’re miles apart and left to fend for themselves.
One way that children often try to cope with your MS is to internalize their feelings. So several studies have found that they may be more prone to feelings of depression and anxiety. Feeling depressed that a loved one is sick, being anxious about the future, maybe feeling angry and blaming you that the situation is unfair (all feelings that you yourself may have gone through) are all normal reactions. How can they ever be happy if their mother or father is sick? But they’ll need to sort out their feelings – with you, trusted family members or friends, perhaps a professional therapist – so they learn to cope a little better and be able to deal with any situations that develop.
3. Recognize that challenges can encourage growth. As your children get a little older, they may be called upon to step up – to take on extra chores, help out a little more around the house, take on extra responsibilities. And all of this may make you worry that MS has forced your children to grow up too quickly. But a number of studies have found that the children themselves often see things in a favourable light. Helping you out can be a great source of pride. They feel more capable, more grown up, and better armed to take on life’s challenges. Learning to cope with your MS often makes a child more empathetic to the people around them. MS is a burden to be sure, but it can teach a valuable life lesson: helping you shoulder the burden is a way for them to express love.
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