Here's why.
In-depth research by Wake Forest University sociology professor Amanda Gengler, shows that, as a way to manage day-to-day living, parents of children with life-threatening illnesses might choose from several communication strategies that could seem off-putting to family and friends.
They prune their social networks. Though you may have considered yourself a close friend to the person whose child is sick, don't be upset if you feel pushed away. To parents with very ill children, friendships can feel like another emotional demand. By cutting or distancing themselves from less critical relationships, parents limit their exposure to interactions that might trigger emotional upset. If well-meaning friends have opinions or suggestions for "better" doctors, hospitals or treatments, this can cause already anxious caregivers to question their decisions and commitments.
They have planned scripts. Planned, brief, upbeat scripts, such as, "he's doing well today" may be used to respond to direct inquiries — helping to manage the fatigue that comes with answering emotionally taxing questions over and over again. Some illnesses and their treatments are complicated, and explaining what is happening at each particular juncture can take too much energy from already strained caregivers.
They direct friends and family to social media and online platforms such as CaringBridge.org to provide updates. It seems impersonal, but online communication removes the difficult work of responding to the expression of emotions from others during in-person conversations. Posting online removes the risk of emotionally draining interactions.
Gengler says in today's positive culture, managing communications about sick children is difficult. Families set the stage themselves, choosing at various times from among several strategies to construct the social environments and interactions that help maintain hope and protect fragile emotional states.
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