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Children: Why To Tell About Your Condition And How To Tell

Guidelines For Telling Adolescents About Your Diagnosis

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  • Full disclosure is not avoidable. The child will know.
  • Let the teen set the pace of the discussion.
  • Common sense and good humor are best approaches with this age group.
  • Recall, or discover the words he or she uses for body parts. Then teach the scientific terms for gaps in the child's knowledge. Medical words and phrases will be readily absorbed into the vocabulary of a child at this age.
  • Use a body diagram to give a scientific explanation of the anatomy and physiology involved in surgery or procedures
  • Encourage the child to ask questions.
    • Let the child know that most people will think of additional questions to ask later on and to come to you with questions whenever the child wants.
    • Assure the child that his questions and your conversations are confidential. The only time a confidence cannot be respected is when it places the child in jeopardy. In such an instance, tell the child this.
    • Teens may also want to know how your diagnosis will affect them. This is normal. For example: common questions are: "Will it disrupt my social life?" "Will I have to do more chores?" Be honest with your answers. 
    • Often teens ask many "what if" questions. They may want to know more about the future. Again, answer their questions as best you can. Warn them that there will likely be ups and downs. Let them know you'll be glad to talk again later. 
    • Let children know that they should still go to school and participate in sports or other fun activities.
  • Be prepared if your teens try to ignore or avoid topics. Teens may act this way because of fear or even due to being embarrassed. They may not want to talk about your body. This may be especially true if your diagnosis involves sex organs.
  • Do not give direct answers to questions before checking out the purpose of the question. This helps assure that you understand the real question, and respond to it.
  • Determine whether the teenager has done reading about the disease or condition or what the child otherwise knows about it. There may be misconceptions that need clearing up - especially if the teenager has been looking around the internet.
  • Suggest that the child come to you when he or she wants more information or hears information from others about your disease rather than ask someone else about the information or do his or her own research.
    • Other people are not likely to know your particular situation. Their information can needlessly scare children.
    • Research on the internet is likely to turn up worst case scenarios and misinformation.
    • If you prefer to help guide a child to do medical research on the internet, we provide "how to" information in Medical Research On The Internet 101.
  • Do not credit the adolescent with an understanding that he does not have.
    • The child's misconceptions need clarification. This age child may have vague ideas about body function that remain unclear because he orshe is embarrassed to ask or does not have the ability to make his needs known.
    • On the other hand, a child of this age is capable of abstract thinking and learning on a sophisticated level, even if he or she needs help doing so.
  • By mid-adolescence, the child wants to be in on the planning and to retain control over what happens in his or her life, although sometimes a child of this age prefers not to know when findings are too threatening. 
  • If the child is concerned about genetic factors, arrange with your doctor for genetic counseling.
  • Anticipate intense feelings which are common in this age range, or intellectualization of the problem to avoid the same unmanageable feelings.
    • An appearance of indifference may be just that - an appearance. Be as understanding as you are of your adolescent's reactions to other important life events.
  • Let your child know that you expect him or her to concentrate on school and after school activities rather than on you no matter what is happening at home. 
    • Children need your permission to focus on academic work. 
    • Let your children know there is no reason for guilt for spending time on their studies instead of focusing on you or the family.
    • If family needs are pressing, help the child strike a balance.
    • Monitor homework assignments and academic performance. 
    • Participate in school to the extent you can. For instance, attend parent teacher conferences. If you cannot go, ask a spouse or significant other, a close relative or friend.
  • Conclude the discussion with treatment goals.
  • Teens often need time to themselves to deal with their feelings. They may want to be alone or with friends. Give them this time.


  • Adolescence is generally a time of great emotinal turmoil even without a parent dealing with a health condition. Watch for difficulties adjusting which may call for professional counseling. If you have a question, ask your doctor for his or her advice.
  • Before telling your children, see: General Guidelines For How Much To Tell Children About Your Diagnosis

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