‘How do I live with a rare disease?’ is a question not just for the person directly affected but for their entire family. This is especially the case when the rare condition affects a child.
Rare diseases affect the entire family
Their parents, siblings, and wider family all face the challenge of living with this disease. The way that many families meet this challenge should inspire us all.
Parents often have an overwhelming sense of grief for the ‘loss’ of the healthy child and that child’s future. This can lead to feelings of guilt, as we berate ourselves for not loving our child as they are. Caring for a child with a rare condition can be twice as exhausting, or more. Life can be endlessly disrupted by hospital visits. If the child’s care needs are very significant, one or both parents may need to give up working, lowering their self-esteem. If one works, they may spend long hours away to earn enough income, weakening family relationships.
Siblings often get left out, receiving less attention
Siblings commonly experience feelings of resentment, as they receive less attention, and then, of course, feelings of guilt for having such thoughts. They can develop weaker bonds of attachment with one or both parents, who might spend days or even weeks away from home living at a hospital; while they themselves stay home with grandparents or just one of their parents. They often ‘grow up too soon’, taking on caring responsibilities for themselves and their sibling.
The child with the rare disease can feel like a burden. Desperate to be ‘normal’, they can find it hard to accept their condition and the constraints it imposes on their daily life and their ambitions, becoming very down about themselves and their future. They can struggle to make friends, as their ‘difference’ can be used to exclude and even bully them, and as weeks away from school makes it hard to maintain friendships.
The human spirit often triumphs
Within this maelstrom of negative emotions, however, the human spirit often triumphs.
Parents learn that they can adore and value their child regardless of the health condition. Their sense of perspective can deepen and broaden: as other parents fuss about head lice or playground politics, they find they can save their anxieties for bigger issues.
Siblings learn early to see beyond the ‘difference’ to develop deep love for their siblings. They can gain emotional and practical skills far ahead of their peers, from empathy to cooking!
The child with the condition can become a robust lover of life, teaching us all, again (because we need reminding), that at a cosmic scale all life is short and all lives are there to be really lived, not just survived.
Roald Dahl, the children’s author, was a real lover of life, not least because of his experiences of bereavement and wartime danger. Today, in his name, Roald Dahl’s Marvellous Children’s Charity works tirelessly to ensure children with rare and under-supported conditions – and their families – have access to an excellent network of emotional support to help them enjoy a rich and fulfilling life.
