Talking with Children About Sclerodermaby 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. 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 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:
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. |