In spite of people in their surroundings that 'mean well', many parents with a child with mcd often feel they stand alone – in both an emotional and a practical sense.
For the outside world it is often difficult to respond to family members of a family with a child with mcd. Some people find it scary and look away; others think it is sad and do not know how to respond or only want to help. Often close ones (grandparents, friends), those in the wider network (e.g. neighbours, parents of friends, relatives) and care professionals think that life in these families is all about care and worries. The result is that parents may end up in an isolated position and feel as if they stand all alone. The lack of understanding and the taboo of the aspects of their lives that do not fit in with the cliché picture of a family, are a heavy burden for parents and other members of the family. A better understanding for their situation, for both the hard and the pleasant things and more insight in the nuances – as parents mentioned – would provide relief. After all, if others could take a look beyond the clichés, they would be able to support and share experiences and joyful moments.