It is difficult to discuss lupus with children. Children with lupus should never have to deal with the concepts of having lupus, but the reality is it does happen. Relating to a child who has lupus can be very hard, but you must remember that you have to be the strong one because they can’t.
The first step for every parent who has a child with lupus is to learn as much as possible about the disease. Children with lupus have very special needs and you must understand them. Educating yourself will help you to educate and talk to your child as changes occur. It is also important that you raise awareness with the child’s teachers, family, and friends so that your child has all the support he/she needs.
When trying to bustle through doctor’s appointments, dealing with your own fears, and dealing with day-to-day life it is sometimes hard to remember to talk to your children. However, if you have a child with lupus it is important to talk to them and allow them to talk back and get their feelings out. Speaking with your child about lupus specifically is difficult, but it must be done.
Children with lupus have a lot of psychological and social burdens. These are other things that you should be willing to speak with them about. As if dealing with having a chronic disease weren’t difficult enough, but they must deal with the symptoms that occur, the side effects of the medication, and if they have to see different types of doctors it is a huge time commitment. One of the biggest challenges in being a child with lupus is simply trying to fit in at school, keep up with their friends, and keep life as normal as possible.
Advice for Parents
Don’t fret. There is a lot of information available for the parents of children with lupus. One of the first places you should visit is The Lupus Foundation of America website, lupus.org. They have a huge section called “The Impact of Lupus on Young People” which is meant to assist the parent in helping children face what they must. The issues this section attends to are: denial, school, peer pressure, parents, siblings, and it also give other helpful suggestions. The website also gives a plethora of medical information and advice on children with lupus.
Kidshealth.org is an award winning site that helps kids and parents with their medical problems. It is not only a place for you, as the parent, to gain knowledge but it can also help educate and comfort you kids and teens. Remember, one of the biggest sources of fear comes from things that we don’t understand.