Full disclosure: I don’t have kids. But this is such an important topic that I decided to read up on it and summarize the highlights. And, I consulted with a good friend in South Carolina, Dr. Dale Dingledine, a psychotherapist, founder of the Greenville Center for Mindfulness, and an expert in mindfulness-based stress reduction.
The short answer to the question of when and how to tell your child you have MS is that it depends on the age and maturity of your child. There is no one right way, and there are many differing opinions. But Dr. Dingledine and other experts do agree that there is no reason to burden your child until they need to know. And they need to know when they start sensing or seeing from your behavior that something is wrong, or just different.
Children do notice behaviors. They are smart, and they often see more than we think they do. They also have active imaginations, and the truth may be less scary to them than what they have conjured up to explain behaviors they don’t understand. Your child may not come straight out and ask what’s wrong; it’s up to you to be sensitive to your child’s level of awareness.
Self-awareness is important, too. When you think your child has reached a point when they need to know, ask yourself whose need this really is. Is it your child’s need to know, or your own need to unload?
When you do decide to explain that you have MS, in general the younger your child, the simpler the explanation should be. A straightforward “I have something called multiple sclerosis, or MS, and it can [make me tired][affect my walking][make it hard for me to be in the heat]” can be sufficient. Focus on behaviors. Older children may want and need more facts; they will cue you to how much to tell them.
Like adults, children need time to absorb difficult information. And, they will undoubtedly need to keep talking from time to time, even if they may have trouble letting you know that. Asking “What did you think when you saw that?” can encourage them to share.
Above all, remember that the goal is to help your child understand in a way that enables them to cope.
Tell the truth. It’s okay to say, “We don’t know how this will go, but right now this is how it is, and we are handling it fine.” Mindfulness is important here. Stay in the moment as much as possible. Avoid projecting or predicting. After all, we really don’t know what will happen, do we?
Keep it real. Of course you want to be as upbeat about it as possible, but if you try to brush it off as nothing, your child could feel that you’re hiding something.
Let your child know that your MS is in no way their fault, and doesn’t affect your love for them.
Encourage your child to talk about it with you and other family members, as well as trusted adult friends. Invite them to ask you questions about it. Professional counseling and support groups can also be helpful.
Be prepared for difficult questions. If your child asks why you have MS, the honest and simple answer is, “I don’t know why.” Your child may ask if he or she will develop MS. Dr. Dingledine suggests that an appropriate response might be, “I don’t know. People don’t know if they will get it or not, but the chances of anyone getting it are very small.” Uncertainty is a hallmark of MS, and you can help guide your child through it.
Keep as normal a routine as possible.
Be realistic about your own limitations, and help your child be realistic too. If you have to bow out of an outing because of fatigue or any other MS-related reason, let your child know what is happening and why. If possible, reschedule. Or plan another, less rigorous activity for another day.
When you’re feeling despondent, talk with your friends. Don’t unload to your kids. They’re not there to carry your burden. And, it may be good for them to know you have friends to talk with about the MS.
One of the most helpful Internet resources I found is http://bit.ly/mo75z. It gives detailed advice for telling a child about a family member’s diagnosis of cancer, and much of it applies to MS as well.
Photo by Writings of Maria