By Robert H. Phillips, Ph.D., Founder and Director, Center for Coping, Long Island, N.Y. Dr. Phillips is a charter member of AARDA's Scientific Advisory Board. 

           Most books and articles written about chronic illness are targeted for adults with diseases.  Much information, all of which is very valuable, is given about the particular disease, such as its symptoms, treatment, and lifestyle changes necessitated.  But there is a unique population that is not addressed often enough in this written material: the adolescent with chronic illness.

              Although children and adolescents may experience many of the same problems living with chronic illness that adults do (such as pain, other physical symptoms, or medication side effects), certain problems are more exclusive for adolescents.

            This article will address a sampling of the problems that may affect adolescents with chronic illness.  Rarely will an adolescent with chronic illness experience every psychological consequence of a chronic illness; however, it is important for everyone involved--parents, friends, educators, and healthcare professionals--to be aware of, and sensitive to, these difficulties.

              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 chronic illness may throw a monkey wrench into that.

            What makes it especially difficult, though, is that unless a chronic illness is affecting the young person to such a degree that he/she is literally unable to function, 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.

              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.  The adolescent's primary "job" is to go to school.  For adolescents with chronic illness, the attitude about school varies.  Some are upset and frustrated if their illness 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.

            Adolescents with chronic illness may have a more difficult time in school if they have to deal with hostility or criticism from their classmates or friends. ("Why can't you go out with us tonight?") 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 chronic illness, adolescents may find themselves ostracized and even excluded from activities that were once within their physical capabilities.

              Peer pressure may also affect young people with chronic illness.  The need to fit in--at its strongest during adolescence--can be devastating to someone who now has a chronic illness with noticeable physical effects (e.g., rashes, bloating, hair loss, disfigurement, etc.) and behavioral effects (slower, more painful movements, etc.).  It is heartwarming to hear stories of young people with chronic illness whose friendships continue despite their illness.  Yet it is sad to hear of other stories in which the adolescent with chronic illness is ridiculed and even abandoned by former friends.

             Parents may be concerned about the effects their child's chronic illness will have on the family, such as financial issues, problems with or neglect of other children, or even feeling as though their independence is being inhibited.  Any of these concerns can likewise affect the young person with chronic illness.  Already unhappy because of having chronic illness, but feeling responsible for problems within the family or with the parents, an adolescent may feel guilt to the extent that it interferes with physical--and emotional--health.

                Parents may be concerned about the effects their child's chronic illness will have on the family, such as financial issues, problems with or neglect of other children, or even feeling as though their independence is being inhibited.  Any of these concerns can likewise affect the young person with chronic illness.  Already unhappy because of having chronic illness, but feeling responsible for problems within the family or with the parents, an adolescent may feel guilt to the extent that it interferes with physical--and emotional--health.

            For example, the young person may not tell parents about a serious physical symptom, knowing that it might mean another trip to the doctor or even the possibility of hospitalization.

              Brothers and sisters of an adolescent with chronic illness 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.