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Adolescent With Lupus As A Young Adult

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We all know that adolescence is a time of confusion and great emotional upheaval, but like psychosis, it is not obvious to the afflicted. Acceptance by peer groups is most important at this age. Young people will do just about anything to gain acceptance, from masking illness with the hope that a disease will go away, to not taking medication in the hope that they will die. Disease and treatment are, therefore, major issues for adolescents. This is the worst time to get lupus and the worst time to treat it. In our new textbook, LUPUS, DeMarco and Szer deftly discuss the problems of young people with the disease, particularly the issue of drug compliance. Adolescents have a non-compliance rate of 60% with steroid regimens. Fat faces, buffalo humps, thin skin, high blood pressure with headaches, and lack of menses are all problems that most young people would like to avoid. For adolescents, the treatment here is indeed worse than the disease.

Children with lupus who are isolated from their peer groups suffer psychological trauma that they are twice as likely to suffer emotionally-caused flares than their non-isolated peers. It is important that parents take an active yet subtle role in instructing this vital peer acceptance. There is no easier way for parents to make things worse than to insist that their child be normal. For adolescents, anything suggested by a parent is "wrong" anyway. Rebellion is the norm in this group, and this makes it particularly difficult for parents and children to confront issues together. I am embarrassed to say that many doctors are not much better at understanding these issues.

Adolescence is also a time of hormonal revolution. It is likely that the disease in both young men and young women is directly affected by the hormonal shifts of early adulthood. In fact, I am convinced that the worst flares of lupus come during the transition from child to young adult, namely puberty. In essence, when the hormones flare, the disease flares.

During adolescence, young people need the support and acceptance of peer, family, friends, lovers and anyone else who happens to be important to their young lives like teachers, ministers and even physicians. It may be helpful to seek out an accepted counselor and not one chosen by the medical community, but rather by young people themselves. If you are in a small town, all of the young people know the counselors in the community that have the stamp of approval. It may benefit the child with lupus for the physician to visit or call such counselors in order to familiarize them with the various aspects of the disease. Most of the high school or college guidance counselors know the names of the accepted counselors, and they can be of immense help.

The issues of sex, attractiveness and procreation are major concerns of the adolescent. What do you say to a girl who needs birth control and has lupus? Adolescents long for acceptance from friends of the same and opposite sex. Boys may feel the physical stigma of being on steroids and having "racing strips" or striae, as they are also called. Moreover, we need to understand that boys who want to be active, yet are unable to endure physical rigors of gym or sports, may also suffer.

Adolescents do not want to stand out, they need to blend in. They have special problems that can be understood and carefully managed. The final and most important thing to realize about this group is that the patient grows out of this period and the disease stabilizes with the growth. The patient's acceptance and understanding eventually arrives, but we need extra effort to get them through the difficult period.

Reprinted, with permission, from Lupus World, Patient Empowerment Through Information, a publication of the University of Massachusetts Medical School, Worcester, MA 01655. Vol.1, No.2. With special thanks to Henrietta Aldjem, Editor.

By, Dr. Lahita is a Professor of Medicine, New York Medical College , Chief of Rheumatology, St. Vincent 's Medical Center . Dr. Lahita is also the author of Lupus: Everything You Need to Know; this and other books on lupus are available through the Lupus Foundation of Minnesota.

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