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.

What do they do?

The unhelpful ways extended families may respond to neuromuscular disease include:

• Denying, minimizing, avoiding
• Hurtful statements, criticisms and unhelpful advice
• Treating children unequally — catering to the affected child to the exclusion of unaffected siblings, or vice versa
• Cluelessness — not understanding the situation and not realizing the effects of what they say and do

Why do they do it?

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:

• Family dynamics. If you had communication difficulties or lack of family support before the diagnosis, you’ll be facing the same thing after it. On the plus side, a family with strong relationships usually will come through in the end. Time, patience and education are the keys.

• Grief often underlies many seemingly heartless acts, especially by grandparents. They’re going through a difficult process, too. They may be overwhelmed and not know what to do, so they don’t do anything.

• Personal discomfort. Inappropriate or insensitive reactions often are an unconscious way of easing pain from strong emotions like grief and helplessness.

• Guilt. Neuromuscular diseases usually are genetic and relatives subconsciously may feel responsible. People sometimes deny the problem exists by saying, “No one else in our family has it, so why would you?”

• Fear and uncertainty. People often don’t know how to react to disability or serious illness. They’re afraid of the unknown, and disability scares them. Lack of education about the disease and the way it progresses also makes it difficult for relatives to respond appropriately.

• Stereotypes and cultural assumptions. Old-fashioned or culturally influenced attitudes toward disability die hard.

What can you do?

Some tried-and-true solutions include:

• Communicate. Set clear boundaries, and say what you need and what you expect. Practice saying it in advance. “I need …” “It would help me if you would …” Focus on what you want and need, not on blame and accusations. You may need help from a counselor or neutral third party. Or it may be more comfortable to write a letter than to speak in person.

• Educate. Teach family members about the disease and how it manifests itself. Give family members books, MDA pamphlets and information obtained online. Invite selected family members to come to an MDA clinic appointment.

  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.

• Blow it off. Don’t waste precious emotional energy trying to straighten out every clueless relative. Practice what to say when hearing unwanted advice, criticism or insensitive comments: “Thank you for your concern”; “I’ll keep that in mind”; “I appreciate that you care. We’ve decided that this is the best way to handle the situation.”

  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.

• Accept and move on. Your family may never become the support system you want, no matter what you do or say. Don’t expect from somebody what they really can’t give you. This attitude can be emotionally liberating. Above all, don’t blame yourself for your family’s lack of support.

• Get counseling. If you can’t let go of your expectations no matter what you do, discuss your feelings with a counselor, in order to get help moving past a difficult situation.

• Find other support. For many people, their best support comes not from family but friends. Minimize contact with people who bring you down. Maximize time with those who respect and support you and your child. Support also can be found in church communities, local MDA support groups and online communities.

• Focus on the positive. Given time, many people adjust and their wonderfulness emerges. Accept that they’ll offer what they can when they can and not before. In the meantime, focus on positive aspects of the relationship, while taking steps to insulate yourself from the negative.

Adapted from When Family Doesn’t Understand, Quest, April 2002, ©2002, Muscular Dystrophy Association Inc.