disclosure: I donâ€™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
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.
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
donâ€™t understand. Your child may
not come straight out and ask whatâ€™s wrong; itâ€™s up to you to be sensitive to
your childâ€™s level of 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 childâ€™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
â€śI 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]â€ť 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 â€śWhat did you think when you saw that?â€ť can encourage
them to share.
all, remember that the goal is to help your child understand in a way that
enables them to cope.
truth. Itâ€™s okay to say, â€śWe donâ€™t
know how this will go, but right now this is how it is, and we are handling it
fine.â€ť Mindfulness is important
here. Stay in the moment as much
as possible. Avoid projecting or
predicting. After all, we really donâ€™t
know what will happen, do we?
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 youâ€™re hiding something.
child know that your MS is in no way their fault, and doesnâ€™t affect your love for
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, â€śI donâ€™t know why.â€ť Your child may ask if he or she will
develop MS. Dr. Dingledine
suggests that an appropriate response might be, â€śI donâ€™t know. People donâ€™t know if they will get it
or not, but the chances of anyone getting it are very small.â€ť Uncertainty is a hallmark of MS, and
you can help guide your child through it.
normal a routine as possible.
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 youâ€™re feeling
despondent, talk with your friends.
Donâ€™t unload to your kids.
Theyâ€™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 memberâ€™s diagnosis of cancer, and much of it applies to MS as well.
Photo by Writings of Maria