Talking with
Children About Scleroderma
by Jaye van Dussen, Scleroderma Foundation Information
and Referral Coordinator (originally
published in "Scleroderma Voice," 2005 #1)
Scleroderma can be hard to talk about, especially
if your children start asking questions or appear anxious.
But you can do it well if you remember a few pieces
of practical advice—be hopeful, realistic, and
provide the proper amount of information.
 |
| Jaye
van Dussen, Scleroderma Foundation Information
and Referral Coordinator |
Telling your children about your diagnosis when you
yourself may be feeling anxious and worried is difficult.
But, experts agree, honesty is the best policy when
telling children about their parent’s illness.
How much to tell them depends on their age, personality,
and the severity of your condition. But not discussing
your illness with them can cause them to fear the worst
and potentially feel responsible for causing your illness.
Children as young as four and five can sense the worry
and tension when information is hidden.
When you tell your children, try to offer a realistic
but hopeful picture of your situation. You can explain
that scleroderma is a serious, but not hopeless disease.
Be mindful that your attitude will color their perception
of what you are saying. There is a world of difference
in talking about how you will live with scleroderma
versus being a victim of scleroderma. Present the information
in small doses and ask if the children have any questions.
More questions indicate that they are ready for more
information.
Some suggestions on what to discuss follow.
What scleroderma is, and how it has and may affect
your body. Kids need to know that although you may
look different, you are still the same inside. They
need to hear that it is not contagious, and that it
was not caused by anything they did. Explain what your
treatment will be.
How your lives may be affected. Reassurance
and love are critical when explaining that routines
may change. Even though none of us knows what will happen
in the course of a day, children can be prepared for
the changes you can plan for. Explain that you may be
more tired because you are sick and that friends and
relatives, and even unfamiliar faces, may be around
to help take care of them, carpool, cook, etc.
Talk about feelings—yours and theirs.
Being honest about how you feel about your diagnosis
may pave the way for them to share what they may otherwise
feel are “unacceptable” emotions. Children
may be angry with you that things have changed. They
may be afraid, feel helpless, and be concerned about
who will take care of them. They may withdraw because
they are afraid to burden you with their worries, or
they may act out to get attention.
Come up with a plan for how they can help.
Many of us feel better when we do something constructive
when someone is ill and it is no different for children.
Ask for their assistance in coming up with a helping
chart to redistribute some manageable and
age-appropriate chores. For little ones, let them know
that a picture they have drawn, a song, adjusting pillows,
or a back rub can help you feel better. Children will
feel less hopeless if they are involved.
There is no way to protect your child from the inevitable
changes that will occur in your family, but knowing
how to respond to and support them will go a long way
to helping them feel as secure as possible. Enlist friends
if necessary to help with the following suggestions
from experts:
- Reassure the child that they did nothing to make
you sick
- Make them feel special and important (e.g., arrange
for them to go on a special outing)
- Talk about how all living things change (look for
examples in nature and your own family)
- Plan activities that provide outlets for feelings
(clay, drawing, physical play, acting)
- Involve the child in appropriate ways of caring
for you (mentioned previously)
Knowing how to respond to and support your children
will go a long way to helping them feel as secure as
possible.
Don’t hesitate to get professional advice if
your child exhibits significant changes in appetite,
sleep habits, mood, physical aggression, or has somatic
(physical) complaints that last more than two weeks.
Ask hospital social workers, your child’s pediatrician,
child psychologists or community mental health centers
about special programs that deal with children’s
adjustment to illness in a family. Your local yellow
pages may also list children’s programs. The Scleroderma
Foundation is also available to help support and assist
you in finding resources for your family. |
