Lupus Canada Advokit

If you're a parent with lupus

As a parent with lupus, you have the additional concern of how your children are dealing with your illness.

You need to be aware of what they may be thinking. They might overhear an adult conversation and misinterpret what was said. They also might assume that they are somehow responsible for what is happening to you and feel guilty.

If your children tend to hide their thoughts and emotions, you may not know what is bothering them. Being open and honest with them about what you are feeling will encourage them to do the same.

Flares and fatigue often interfere with the lives of families, and if your children know how you are affected, they will be better able to understand your limitations - for example, why you can't be at their school events or participate in other activities. It will also help them feel better about doing extra chores around the house and making quiet time when you aren't feeling well.

Different children react differently to the situation, because of age or personality. Informal family discussions may help to get some of the feelings out in the open.

For example, children especially need to understand that they did not 'cause' lupus to happen. There is no known cause for lupus - yet. Some of the best researchers are working to find out the causes or cause and how to cure it.

Limit stress

If you think your family is having serious problems, you might ask your lupus association to recommend family support groups. Counselling or family therapy might be helpful if the family is having a particularly stressful time.

There are good books, articles and pamphlets written on the subject and your local association can provide suggestions. Above all, remember that adding family stress to your physical condition will just complicate your lupus.

Try not to assume that you should be able to handle everything on your own, or that you're the only parent who has ever had this problem. There is help and support for you, and getting help is a sign of wisdom, not of weakness.

During a serious lupus flare, you might consider making arrangements for your children to stay with a close family member or a good friend. It is a good idea to make these arrangements when you are feeling reasonably well.

Then you can explain the circumstances to your child; telling them that it will help you to get better, and that it will only be a temporary situation. Assure them that you will be happy knowing that they are well taken care of while you are not well.

The children's teachers, sports coaches or activity leaders (Cubs, Brownies, Scouts, Guides) should also be alerted to your health problems. They need to have enough information to understand why a child might behave differently at certain times.

In addition, they can give the child an opportunity to share with a trusted adult the feelings they hesitate to talk about with a parent or family member.