When the chips are down, we expect our extended family (parents, adult siblings, aunts, uncles and cousins) to be there for us. Sometimes they are, but sometimes they aren’t.
Where we hope to find support, instead we find empty phrases, or criticism, or denial, or worse, nothing at all. Instead of helping us cope, their responses make things harder. Comments and actions that would bounce off coming from a stranger cut to the heart because the source is a family member.
The unhelpful ways extended families may respond to neuromuscular disease include:
People may assume family members behave insensitively because they don’t care, but that’s rarely the case. Usually other factors are at play, including:
Some tried-and-true solutions include:
Encourage loved ones to be upbeat and focus on the positive, and to treat your child as normally as possible. Educate family members about how to act around someone with a disability, by helping them get to know your child better.
Try to focus on the person’s intention, rather than the words. If you have the energy to educate them, then go for it. But don’t feel as if you have to fight every battle.
Adapted from When Family Doesn’t Understand, Quest, April 2002, ©2002, Muscular Dystrophy Association