Lupus Canada Advokit

If your child has lupus

For the parent of a child with lupus, information is equally important. Everything - symptoms, medications, side effects, sun sensitivity - will affect what you and your family can do together. It is easier to cope when everyone is informed about what they are dealing with.

Children react to peer pressure, and some of the difficulties that arise can be as much age related as lupus related. But either way, a chronic condition alters everyone's perspective.

A parent needs to be aware of how sisters or brothers are dealing with the illness, and how they are affected by the attention the child with lupus is getting. The child may be unwilling to accept the reality of the disease and the routine of treatment and medication. Denial - by the child or others in the family - may require counselling, perhaps for the whole family.

Parents are encouraged to get together with other parents and exchange information about how they have dealt with various situations. It's always good to know that you are not alone with your problems.

If there are peer groups of children with chronic illnesses, you might encourage your child to meet with them, both to recognize that others face similar issues and to learn new coping skills.

School and the community

Some adults who deal with your child may be familiar with lupus and others may not. Your child's teacher, community leader or religious leader should be provided with up-to-date and accurate information about lupus. They need to know about symptoms, medications and side-effects, in case they need to deal with a sudden problem.

If it is something they are willing to do, you can encourage your child to speak to the class or group about lupus and its effects, or to do a science project about it.

Classmates are often more accepting of a situation if they are told about it openly, and this may help your child cope better in the peer group. Instead of having to explain absences, your child can return to school and simply acknowledge that lupus was acting up again.

Make time for yourself

To cope with the stress when a family member is ill, many of us tend to shut ourselves off from the world. We need to make a real effort to take time for ourselves, outside the family. While there are countless activities to choose from, some have found volunteering with the local lupus association is an effective way of dealing with the feelings of helplessness.

Volunteering can provide opportunities to meet other people with lupus and their families and see how they have coped with the disease. Volunteering is also a source of up-to-date information and a variety of supports.

As an example: when two of the four adult children in a Toronto family were diagnosed with lupus (within a year) the parents did what they could during the times of illness. The young people were living away from home, and both parents were frustrated that there seemed to be so little they could do to make things better.

They decided to join their local lupus association, to see what they could do to help. It was also a way to educate themselves about the disease and to meet others who faced similar problems. They volunteered their time because it seemed to be a pro-active approach to the family situation.

Certainly, not everyone has the time or the inclination to volunteer. Still, it can be a good way to learn about lupus and to confirm that we are not alone in dealing with it.