Lupus: Its Impact on Young People
By Robert H. Phillips, Ph.D.

Introduction
Most of the books and articles written about lupus are targeted for adults with lupus. There is a lot of information about the disease, such as its symptoms, treatment and lifestyle changes necessitated, all of which is very valuable. But there is a unique population that is not addressed often enough in this written material: the young person with lupus.

Lupus is most commonly diagnosed in women of childbearing age, and men are diagnosed as well, although in smaller numbers. But it is important to remember that boys and girls before childbearing years also can be diagnosed with lupus. And although they may experience many of the same problems that adults do (such as pain, other physical symptoms and medication side effects), certain problems are more “exclusively theirs.”

This article will address a sampling of the problems that may affect young people with lupus. (It is not the scope of this article to discuss medical facts. Rather, it focuses on the psychosocial issues that may appear). Rarely will a young person with lupus experience every psychological problem due to lupus. However, it's important for everyone involved – the young person, other family members, friends, educators and healthcare professionals – to be aware of, and sensitive to, these difficulties.

Denial
It is interesting that adolescents, more than virtually every other age group, have a common, non-verbalized (and sometimes loudly verbalized) belief about their medical status: “I'm fine!” They don't want to feel sick; they don't want to be sick; and they don't want to be different. But lupus may throw a monkey wrench into that.

What makes it especially difficult, though, is that unless lupus is affecting the young person so aggressively that they are virtually unable to move, in many cases the young person's attitude will continue to be “I'm fine.” This can be frustrating for other family members, who are trying to be protective and helpful, and for healthcare professionals, who have more difficulty treating a young person if the answers to questions about symptoms are evasive or denying.

School
Adults who work generally have a clear sense of their responsibilities and obligations at their jobs; they know that if they don't work, changes will result – many of which can be difficult and unpleasant. Young people, whose primary job is to go to school, may go because they want to and because they know they are expected to. Yet they may not be aware of the far-reaching implications of inconsistent school attendance.

For young people with lupus, the attitude about school varies. Some are upset and frustrated if lupus interferes with consistent school attendance and schoolwork performance. Others see school as less important and may have few or no qualms about missing excessive time in school.

Young people with lupus may have a more difficult time in school if they have to deal with the cruelty of other children (“What is that ugly rash on your face?”) or the ignorance of teachers (“You've missed too much school work; either get with the program or you're going to fail.”) In addition, because of lupus, young people may find themselves ostracized and even excluded from activities that were once within their physical capabilities.

Peer pressure
Peer pressure may also affect young people with lupus. The need to “fit in” – at its strongest during childhood and adolescence – can be devastating to someone who has a chronic illness with noticeable physical effects (e.g., rashes, bloating, etc.) and behavioral effects (slower, more painful movements, etc.).

It is heartwarming to hear stories of young people with lupus whose friendships continue despite their illness. Yet it is sad to hear of other stories in which the person with lupus is ridiculed and even abandoned by former friends.

Parents
Young people with lupus may have difficulties with parents being overprotective (“Stay inside, the sun is out”), not protective enough (“You want to go to the beach? Do whatever you want”), or insensitive to their needs (“Stop complaining about your pain, already. Get up and finish your school work”).

Parents may be concerned about the effects their child's lupus will have on the family, such as financial issues, problems with or neglect of other children, or even feeling like their independence is being inhibited. Any of these concerns can likewise affect the young person with lupus. Already unhappy because of having lupus, but feeling responsible for problems within the family or with the parents, a young person may feel guilty to the extent that it interferes with their physical and emotional health.
For example, the young person may not tell parents about a serious lupus symptom, knowing it might mean another trip to the doctor or even the possibility of hospitalization.

Siblings
Brothers and sisters of a young person with lupus may be very resentful. Being less able to understand the physical impact of the disease, they may dislike the added “attention” being directed at their sick sibling. They also may not like getting less attention, and may act out in an attempt to regain their “share” of parental interactions. Their resentment toward their sick sibling may be manifested in many hurtful ways, such as anger, ignoring instructions, spiteful behavior, concealing important information from their parents, etc.

A final note
It is difficult enough for anyone to live with lupus, but the young person with lupus has added, age-related problems. Being aware of the potential impact of lupus in young people does not eliminate these problems. But increased awareness can pave the way to a better understanding of the unique needs of young people, and can lead to methods for better alleviating the problems that may occur.

Some Helpful Suggestions for Parents and Other Adults Dealing with Young People
Be Sensitive to the young Person's unique needs. Lupus can be a difficult disease to live with, especially for a child who has fewer “coping strategies” in place. Don't assume that the young person has the emotional strength or the social support network to handle lupus-related problems successfully.

Communicate appropriately. Try to look at any lupus-related issues through the eyes of the young person. See what they see. Feel what they feel. Using anger and aggressiveness in “forcing issues” is rarely productive. Calm, constructive discussion is a much more positive way to address lupus-related issues.

As much as possible, treat the young person like an adult. Plan together the appropriate ways to treat, and live with, lupus. Demonstrating adult-like behavior in interactions with young people is more likely to generate adult-like behavior in return.

Educate significant others. Any individuals who are not familiar with lupus, including family members, friends and teachers, can be obstacles to successful living with lupus. This is especially important in school, since the young person is going to spend a good number of hours there each day. Provide pamphlets and other information to teachers, guidance counselors and even classmates, so that school can truly be a “home away from home.”

Reprinted with permission of the Lupus Foundation of America, ©2001. Dr. Robert H. Phillips is founder and director of the Center for Coping in Long Island, NY ( www.coping.com) . He has been in private practice as a licensed psychologist since 1975 and has published and spoken widely on coping with physical ailments and other psychological topics. He has appeared on dozens of television and radio programs and currently is the host of “Coping Conversations, “ a weekly radio talk show on WKJY-FM (98.3) on Long Island .

Dr. Phillips is the published author of more than 20 books, including the highly popular Coping With Lupus (now completely revised and updated for its third edition); Lupus: Everything You Need to Know (with co-author Dr. Robert Lahita); and his new Successful Living With Lupus: An Action Workbook, published last year. These books, as well as several others, are available for sale from the Lupus Foundation of Minnesota (952-746-5151).

Dr. Phillips has served on the National Board of Directors of the Lupus Foundation of America and currently is a member of the Lupus News Advisory Board.


=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.