Emotional Effects of Diagnosis - Frequently Asked Questions

Should we disclose, or not?

25 January 2010
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The decision whether or not to tell others about your child's epilepsy depends on many factors. Before you tell anyone outside of the family about the condition, you should discuss it with your child. Ensure that he/she understands why it is necessary to disclose his/her condition. It is probably not necessary to tell everyone, so discuss with your child who you are going to tell. Allow your child to play a role in deciding this. As a general guideline, you should consider informing people of your child's epilepsy once he/she has had more than one seizure. This is especially important when the seizures are frequent and when the child's medication causes side effects. Informing others will allow them to be prepared in the event of a seizure. If the child's friends seem understanding, the decision to tell them may be easier.
 

However, it is never easy to predict how others will react. While you may be fearful that other people will dwell on the disorder and blow it all out of proportion, it is important for your child's safety that others are informed. Use your own judgement in deciding what to tell others, remembering that openness is preferable. You should also encourage openness to help build your child's self-esteem. Secrecy reinforces the idea that epilepsy may be something shameful. Secrecy interferes with acceptance and can erode a child's feeling of self-worth. A straightforward approach to dealing with epilepsy may appear to be difficult initially but will pay off in the long run.

 

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