However, the physical effect of the disease influenced their social choices. Although many caregivers were socially active, and participated in school events, many more chose to limit this aspect of their lives. Caregivers also spoke of stigma and their striving for normalcy. Choosing to live is an act of personal empowerment, and this general sense of choice and power surfaced many times during the discussions. The choice to tell or not to tell creates a dilemma and was of tremendous importance.
Issues related to disclosure affect the life of each and every family.
Telling is also connected to protecting. Families felt an overwhelming need to protect themselves and others. Sometimes this protection surfaced as the choice not to tell. However, choosing to remain silent can result in a sense of voicelessness. Some families felt as though they were not able to ask about school policies and advocate change, because doing so would require disclosure.