The Adolescent with Lupus
By Robert H. Phillips, Ph.D.
Center for Coping
Ah, the joys of adolescence! Adolescence can be one of the most difficult periods in anyone's life. Adolescents may be called swingers: not because their so terrific and (although they can be), but because their behavior and moods may swing so extremely, from the childish dependence of years gone by, to the mature independence of adult years approaching. Adolescents frequently feel insecure and unstable. The adolescent years tend to be sensitive years, with resentment and rebellion when needs or desires are thwarted, and with closeness on those occasions when adult understanding is shown. The adolescent usually works hard to become more independent and to assert his independence to his parents.
The diagnosis of lupus can create major difficulties for adolescents. The natural inclination of any parent is to become over-protective when a child is sick. Interference from parents is almost always strongly objected by adolescents. This is because the adolescent is trying to become more independent. Parents frequently have a very hard time dealing with the diagnosis of lupus in their adolescent. In all likelihood, this will increase adolescent rebellion. Rebellion is a normal part of adolescence, regardless of whether or not lupus is involved. Parents should try not to be overprotective, and should try to be as tolerant and as understanding as they can. In cases where the adolescent does something wrong, discussions offering support and understanding are more appropriate than put-downs and reproaches.
Rebellion may occasionally lead to more serious physical problems for the adolescent. The problems occur because a rebellious teenager may be less diligent in proper lupus self-care. On occasion, the adolescent may purposely try to make him or herself worse, possibly by taking insufficient amounts of medication or staying out in the sun. The adolescent knows that these behaviors can be harmful, but does them anyway. Hopefully, it will be learned without dangerous consequences that there are better ways to get through adolescence!
Problems with Friends
Lupus can restrict friendships. This is a problem for anyone, but especially for the adolescent, since making friends is probably one of the most important activities during the adolescent years. The adolescent may not be able to spend as much time as desired with friends. It may not be possible to go out as often or keep late hours. It may be necessary to cancel plans at the last minute due to illness. This can hurt friendships, new or old. Parents need to be aware of this so they can try to help. In some cases, teachers might be willing to provide the adolescent's classmates with short lessons about lupus, what it is and what it can do (after learning themselves, of course!). Hopefully, this will bring about more support and understanding.
Many adolescents are embarrassed that they have lupus. Any illness can be a stigma to an adolescent because teenagers believe they need to be O.K., or it may cost them friends. Because of this, it should be up to the adolescent to decide who among friends and others should be informed. Teachers should know about the illness. Attendance may suffer because of lupus, and on certain occasions, tests or projects may not be completed because the adolescent is simply physically unable to complete them. The adolescent might choose not to share this information with all his friends because it might be sensed that in some cases friends would be afraid, upset, or even hostile. Some friends may ignore the adolescent, not wanting to be near a sick person. So the adolescent should be the one to decide.
Who Handles it Better?
Many adolescents with lupus cope with it better than their parents do! Parents may feel guilty because they may feel that they've done something wrong. Parents frequently feel that it is their responsibility to protect their child from harm, disease, or injury. The adolescent who only feels some occasional pain (which adolescents are able to handle more effectively than other age groups) and fatigue, (which adolescents will either rest out or push past), can maintain a fairly normal, active life despite having lupus.
Occasionally, an adolescent may act differently when with friends (and in school) than with parents or other family members. Could it be that the adolescent is enjoying the protection and concern of parents? Maybe the adolescent puts on a different face with family than with friends. Isn't that frequently the case, even if lupus is not involved? Adolescents may be more willing to confide in their parents about pain or symptoms than their friends. They don't want friends to think they complain all the time.
Some parents try to protect their adolescent by not telling them everything about their illness. But this may not be the best approach. Some adolescents feel that not being told the truth is an injustice. Adjusting to lupus may take a lot longer. Anger and bitterness between adolescent and parent may seriously hurt their relationship.
Questioning the Future
As the adolescent gets older, certain troublesome questions may come to mind. The adolescent may wonder, "Will I be able to marry?" Will I be able to have children?" "Will I be able to make and keep friends?" "Will I be able to finish my education?" Will I be able to function as a normal member of society?" These questions occur to almost all adolescents, but having lupus makes them even more worrisome. The answers? As long as symptoms and requirements of having lupus are taken into consideration, and lifestyle is adjusted where necessary, the adolescent should be in the same position to answer these questions as any other healthy teenager.