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.
Monday, April 30, 2007
Kids Adapting to Lupus
Kids Adapting to Lupus
About 25 percent of lupus begins in childhood and adolescence, posing special problems. Pain, fatigue, the interruption of school and sports activities, limitations of mobility, change in appearance, and the feeling of being different are all particularly difficult for kids.
Lupus in childhood threatens the normal development process of gaining social and academic skills, the formation of a solid identity, and the development of independence and separation from parents. Very young children have rather concrete notions of disease, essentially that it is a result of accidents or catching germs from someone else. The more abstract reasoning required to understand lupus as an autoimmune disease does not usually develop fully before adolescence. In addition, children are focused on the immediate aspects and consequences of their disease, such as whether or not they can go to school or spend time with their friends or engage in any particular activity that day or that week. It's not until adolescence that children begin to understand the way in which their disease might interfere with their future goals. Depression stemming from this perception of future loss may be more of an issue for adolescents.
Lupus in children is essentially the same disease as that which occurs in adults. Some newborn infants of mothers with SLE experience abnormally slow heart rhythms and temporary skin rashes, the so-called "neonatal lupus syndrome", this is caused by antibodies that originate in the mother, but affect the newborn. This is not true lupus. In childhood, as in adulthood, true lupus can cause joint pain, fever, fatigue and butterfly rash as well as serious organ dysfunction, such as kidney or central nervous system involvement. Test results are similar, and treatment recommendations for childhood lupus are essentially the same as that for adults.
In most parts of this country, children with lupus are treated by pediatricians and often by a rheumatologist with special training in pediatric lupus. Generally, by the time patients reach adolescence, their care is transferred to an adult rheumatologist. However, the timing of this transfer may vary considerably and should be managed sensitively. Another significant difference with the treatment of lupus in children has to do with the effects of prednisone and other corticosteroids; calcium and vitamin D supplements are used to avoid or delay future problems with osteoporosis.
Over time, the adolescent patient should assume an increasingly autonomous role in her or his own care. They should be expected to do the talking in an appointment and have answers directed to them rather than to their parents. They should gradually gain responsibility for handling medications and scheduling their appointments while parents monitor the situation. They also have a right to confidentiality that should be respected.
However, as much as kids want to become independent from their parents, they are anxious about taking these steps, whether it be going away to college, or communication directly with their doctors, making appointments, or generally assuming responsibility for this aspect of their lives. They may forget their medications, appointments, and their need for rest and sleep. These are opportunities to provide additional guidance, reminders, and encouragement and not to usurp control of their healthcare. These are also good opportunities for open dialogue about the issues of independence and expectations of support. Studies of other chronic childhood diseases, such as asthma and diabetes, suggest that kids often fail to take their medications in the prescribed dosage. It is very important to involve children as active participants in their own health care.
Within the family, it is important to not treat the child with lupus differently than other children. For example, kids should not be over-sheltered or protected from the usual expectations or developmental challenges. Parents commonly feel guilty about their children with lupus because of the influence of genetic factors in its onset. However, they need to manage that guilt in such a way as not to become over-involved in the life of their ill child to the point of suspending their lives or neglecting the need of their other children.
Kids benefit from having some contact with adults who have had lupus and yet managed to live full and gratifying lives. One patient, Vicki Croke, now a journalist for the Boston Globe, has written about the importance of discovering the example of Henrietta Aladjem. When Vicki was quite ill she met "Hennie", whose disease by then had been in remission for many years, Vicki's hope was restored. Kids above all need a vision for themselves in the future and adult role models to help provide it. They also benefit from having contact with other kids with illness, either in support groups or in chat groups on the Internet. One nine year-old with lupus, Jessica, has a web site in which she described her illness, the disruption in her activities, the teasing about prednisone-related weight gain and her recovery. The teasing improved when her mom, a nurse, came to school and explained the illness to her class.
Fortunately, children and adolescents are extremely resilient. With the support of their family, friends, and doctors, most manage to negotiate the extra challenges imposed by illness. Sometimes counseling or psychotherapy can be helpful as well. At times parents need counseling even more than their children. If more difficulties or anxiety persist, psychiatric intervention and / or referral are recommended.
By Malcom P. Rogers, MD.
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Alwaysconsult your physician on matters such as this.
About 25 percent of lupus begins in childhood and adolescence, posing special problems. Pain, fatigue, the interruption of school and sports activities, limitations of mobility, change in appearance, and the feeling of being different are all particularly difficult for kids.
Lupus in childhood threatens the normal development process of gaining social and academic skills, the formation of a solid identity, and the development of independence and separation from parents. Very young children have rather concrete notions of disease, essentially that it is a result of accidents or catching germs from someone else. The more abstract reasoning required to understand lupus as an autoimmune disease does not usually develop fully before adolescence. In addition, children are focused on the immediate aspects and consequences of their disease, such as whether or not they can go to school or spend time with their friends or engage in any particular activity that day or that week. It's not until adolescence that children begin to understand the way in which their disease might interfere with their future goals. Depression stemming from this perception of future loss may be more of an issue for adolescents.
Lupus in children is essentially the same disease as that which occurs in adults. Some newborn infants of mothers with SLE experience abnormally slow heart rhythms and temporary skin rashes, the so-called "neonatal lupus syndrome", this is caused by antibodies that originate in the mother, but affect the newborn. This is not true lupus. In childhood, as in adulthood, true lupus can cause joint pain, fever, fatigue and butterfly rash as well as serious organ dysfunction, such as kidney or central nervous system involvement. Test results are similar, and treatment recommendations for childhood lupus are essentially the same as that for adults.
In most parts of this country, children with lupus are treated by pediatricians and often by a rheumatologist with special training in pediatric lupus. Generally, by the time patients reach adolescence, their care is transferred to an adult rheumatologist. However, the timing of this transfer may vary considerably and should be managed sensitively. Another significant difference with the treatment of lupus in children has to do with the effects of prednisone and other corticosteroids; calcium and vitamin D supplements are used to avoid or delay future problems with osteoporosis.
Over time, the adolescent patient should assume an increasingly autonomous role in her or his own care. They should be expected to do the talking in an appointment and have answers directed to them rather than to their parents. They should gradually gain responsibility for handling medications and scheduling their appointments while parents monitor the situation. They also have a right to confidentiality that should be respected.
However, as much as kids want to become independent from their parents, they are anxious about taking these steps, whether it be going away to college, or communication directly with their doctors, making appointments, or generally assuming responsibility for this aspect of their lives. They may forget their medications, appointments, and their need for rest and sleep. These are opportunities to provide additional guidance, reminders, and encouragement and not to usurp control of their healthcare. These are also good opportunities for open dialogue about the issues of independence and expectations of support. Studies of other chronic childhood diseases, such as asthma and diabetes, suggest that kids often fail to take their medications in the prescribed dosage. It is very important to involve children as active participants in their own health care.
Within the family, it is important to not treat the child with lupus differently than other children. For example, kids should not be over-sheltered or protected from the usual expectations or developmental challenges. Parents commonly feel guilty about their children with lupus because of the influence of genetic factors in its onset. However, they need to manage that guilt in such a way as not to become over-involved in the life of their ill child to the point of suspending their lives or neglecting the need of their other children.
Kids benefit from having some contact with adults who have had lupus and yet managed to live full and gratifying lives. One patient, Vicki Croke, now a journalist for the Boston Globe, has written about the importance of discovering the example of Henrietta Aladjem. When Vicki was quite ill she met "Hennie", whose disease by then had been in remission for many years, Vicki's hope was restored. Kids above all need a vision for themselves in the future and adult role models to help provide it. They also benefit from having contact with other kids with illness, either in support groups or in chat groups on the Internet. One nine year-old with lupus, Jessica, has a web site in which she described her illness, the disruption in her activities, the teasing about prednisone-related weight gain and her recovery. The teasing improved when her mom, a nurse, came to school and explained the illness to her class.
Fortunately, children and adolescents are extremely resilient. With the support of their family, friends, and doctors, most manage to negotiate the extra challenges imposed by illness. Sometimes counseling or psychotherapy can be helpful as well. At times parents need counseling even more than their children. If more difficulties or anxiety persist, psychiatric intervention and / or referral are recommended.
By Malcom P. Rogers, MD.
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Alwaysconsult your physician on matters such as this.
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