Long term health conditions

Dealing with the family

The diagnosis of a chronic (long-term) condition in a child or teenager usually affects the whole family. It can take time for parents, brothers, sisters and grandparents to learn about the family member's condition and work out how best to help. Relationships between young people with a chronic condition and parents can become particularly intense at the point when young person would usually be leaving home. Here, young people talk about how they feel about their parents and about their siblings. They reflect on how they've coped with growing up and attempting to become independent. 

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All the young people we talked to said they recognised that they could not have coped without the love, encouragement and practical support of their parents, though some of them said they had gone through bad times when they blamed their parents for what was wrong with them. Many talked about how upset, their parents had been by their diagnoses and how they'd realised that their medical condition caused worry and anxiety for their parents. 

Talking about Mums

Many young people described how their mothers had taken more control of the practicalities of their illness than their fathers. They said that it was their mothers who managed practical things like medication, repeat prescriptions, arranging checks ups and appointments. And that it was also mothers who took responsibility for keeping in touch with nurses and consultants, and who took them to hospital when they were ill or needing treatment.

But mothers could also worry too much. Some young people said that their mothers could be overprotective and described how it had caused tension especially when they wanted to go out with friends or travel abroad. 

Several young people, whose mums had been single, said it must have been hard for them to manage their other children as well. Grandparents were often a great help, particularly as babysitters of other children in the family and also because they were able to give mothers some time off.

Talking about Dads

Some fathers were said to have been fantastically supportive and involved, others less so. 

A teenager who had to spend a long time in hospital following a kidney transplant said that her illness had brought all of her family closer.

Several young people said that when they were younger they'd found it difficult to talk to their dads about anything connected with their illness. Some said they felt that their dads didn't want to know about their problems. Others thought that their dads might appear 'emotionally distant' but actually felt deeply about them on the inside. One young woman wondered if her dad might have felt 'pushed aside' by her mother.

Some young people stressed the point that fathers do care but do not show their emotions in the same way as mothers. One young man said that his father helped to provide things in life that were not directly to do with his condition, like encouragement at school, work, etc.

Trying to protect parents

Some young people said that they felt they wanted to protect their parents' feelings because they felt their parents worried too much. They decided not to tell their parents when they were feeling ill or depressed about their condition in order to protect them and because there was nothing they could do about it anyway. One young woman said that after her diagnosis her parents were so worried that she had to support and help them understand about her condition almost as if she were the parent and they were the children.

Trying to be independent

Parents tread a fine line between being caring and loving and being seen as 'overprotective'. People who'd been diagnosed with a chronic condition as children or teenagers said their parents had allowed them to be more independent as they were growing up by giving them responsibility and not restricting them. 

Alcohol often caused disagreements at home especially if the condition (e.g. epilepsy) could be triggered by alcohol. Several young people said they felt that their parents got too wound up about alcohol and didn't seem to trust them to be responsible about it.

Sometimes concern and encouragement from parents was seen as quite harsh. Several people said that their parents had made them exercise when they felt tired (see clip below), or had made sure they kept up their school work, but looking back they thought that their parents had perhaps been right. 

One man diagnosed age two with arthritis suggested that although sometimes parents can be overprotective, this can be beneficial later on. He said that he had learnt from his parents how to look after himself as an adult dealing with a chronic condition, i.e. asking the appropriate questions to doctors, being forceful and getting things done.

Relationships with brothers/sisters

Some of the young people we talked to had been diagnosed in early childhood and said that their relationship with their siblings had definitely been affected by the illness. Brothers and sisters could feel neglected by their parents because they were giving the child with the chronic condition too much time and attention. Many young people in this group said the situation improved as everyone grew up.

Others had a completely different experience and described how supportive their brothers and sisters (often older than them) had been. Several said that their siblings helped with their home treatment and knew when they felt bad. 

Last reviewed May 2014.

Last updated February 2012.

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