Living well with lupus

How do friends and family cope with a diagnosis of lupus in a child?

Lupus affects the entire family. Educating the whole family about lupus and the particular needs of your child can help make everyone feel more at ease. You may also find it useful to educate your neighbors and friends. Lupus support groups can be a good way for your family to meet other families living with lupus, learn more about the disease, and explore coping strategies. Getting the whole family involved in local LFA chapter activities can help your child feel like they are doing something constructive about their disease.

You may spend a lot of time with your child with lupus, due to doctor appointments, treatment needs, sick days, etc., but be sure that your other children, your spouse, and all caregivers -- including yourself! -- are not neglected. Remember that each family member needs their own space, their own activities, and the opportunity to express their feelings. Regular family meetings are an ideal way to bring problems out into the open and to come up with solutions that work for all of you.

Children, like mirrors, reflect adult stress and behavior. Although you will be understandably anxious about the lupus diagnosis, try to maintain good spirits and a healthy attitude. Your child will be depending upon you for this as much as for all the other supports you provide. The very best thing you can do, whenever possible, is to create a normal life for your child with lupus.

Medically reviewed on August 16, 2013