Unfortunately Lupus is not just a disease affecting women and men; children as young as five can contract lupus. They experience a wide range of psychological and social problems associated with this disease. How they cope depends largely on the adults around them. These social and psychological problems can stem from six vital areas in a young child’s life: denial of the disease, parents dealing with them and they with the child, peer pressure, siblings.
Kids hate to be sick unless they are trying to get out of a math test. Kids are designed to be active, inquisitive, energetic bundles of trouble. They do not like to sit still, much less lie in bed all day. They generally hate to go to the doctors and just try to get a kid to take medicine! So faced with a chronic disease like Lupus where they can experience extreme Fatigue, bloating, rashes, aches, pains and swelling body parts and any kid will scream Ã¢â‚¬Å“I am not sick, I am just fine, leave me alone!Ã¢â‚¬Â
The way kids generally think is this: If they ignore it, it will go away. If they dont tell mom they notice have a symptom of their disease then she cant make that doctor appointment that will take them away from playing with their best buds after school. Maybe, just maybe, if they shut their eyes and wish really, really hard, it will all just go away. Denial, its in every kids arsenal against dreaded diseases.
No parent wants his or her child to be ill. Let it happen to the neighbors, but not to them. A chronically ill child means time off from work to take them to doctors appointments, countless trips to the pharmacy for medications, refereeing fights between jealous siblings and an over-sensitive sick child who shrieks every time someone looks at him.
Parents need to advocate for the rights of their child at school, at youth organizations, at the doctors office and between family members, friends, co-workers and neighbors. Parents must walk the fine line between over-protectiveness, and compassion, understanding and ignorance. They must ask questions, do research and generally become an expert on their childs disease, so that they can better understand how to help him.
Kids the same age as your child will have an influence on him; good or bad. Your child will care about what other kids think about the way he dresses, acts, and looks. The opinions of his peers will be very important to him. Especially important is how they will react when they find out he is has a disease called lupus. Will they still want to play with him after they find out? Will he ever be invited to play with them or eat lunch with them once they know he has a chronic illness?
No matter how brave you child pretends to be, what other kids his age think about him does matter. Your child will have the strongest desire to fit in, to be just like everyone else during his childhood and adolescent years. Being different is not cool. Your child will not want to stick out because he is all bloated or rashy.
Sisters and brothers can be very supportive, especially when they are older. Especially if they have the information they need to understand what is happening with the sick brother or sister. Jealousy is very common because of all the time and attention showered on the child who is ill. This is perfectly normal for siblings to feel a sense of jealousy, even anger at the situation. Finances may be tight, which will cause others in the family to resent the costly medicines and doctors appointments.