Dealing with the family

The diagnosis of a chronic condition in a child or teenager usually affects the whole family. It can take time for parents, as well as 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 normally a young person would 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.

His parents, sister and grandparents have all helped him cope with arthritis.

All the young people we talked to said they recognized 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 had realised that their medical condition caused their parents - mothers especially - worry and anxiety.

Both his parents have given him so much love and support it has made it much easier for him to cope with his ME.

When she was a teenager she felt angry and blamed her mother for her epilepsy but now their relationship is much better.

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.

She describes how her mum had to put her own life on hold because she spent all her time and energy looking after her (she has CF).

Says that her mum worries about her because she's a mum but that she also knows when to back off.

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.

She feels that her mum can be 'a bit mollycoddly' and that she worries too much about her going out.

Several young people, whose mums had coped alone, 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.

Her mother got worn out trying to cope with her CF when she was young and sometimes needed help from neighbours and family.

Her mum has never let her go to hospital by herself and has always taken her sister along too.

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 her family closer.

She used to think that her dad didn't care about her epilepsy but now she has a better relationship with him.

Despite financial difficulties she feels that her condition has brought the family much closer and she appreciates her stepdad more than before her surgery.

Several young people said that when they were younger they had 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 be 'emotionally distant' but actually felt deeply about them on the inside. One young woman reflected that 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.

Her parents were so worried when she was diagnosed with type 1 diabetes that she felt she had to look after them as well as herself.

Her relationship with her mother has been shaped by her experience of having ME. She didn't want to tell her mother some things because she knew it would only upset her.

Trying to be independent

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

His family has given him emotional and practical help since he was two years old. Now he enjoys his independence and asks his parents for advice but he makes his own decisions.

Says that her mother became less protective and more understanding after she herself was diagnosed with type 1 diabetes.

She says that because her father has epilepsy, her parents knew what to do and she wasn't overprotected or felt worried about it.

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.

Says that his mother still worries a lot about him especially when he goes out with friends.

Sometimes parental concern and encouragement was seen by young people as bordering on being harsh. Several 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.

Her mum can be quite tough and makes her take exercise during attacks (she has sickle cell) but even though it hurts at the time she knows it's good for her in the end.

One young man diagnosed age two with arthritis emphasized that although sometimes parents can be overprotective and seen as wrapping you in cotton wool this is very beneficial later on. He said that much of the things your parents do for you, you take on board and learn from when you are 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.

Says that it must have been difficult for her younger sister to understand why they were given different foods or why their mother gave more time and attention to her.

Others had a completely different experience and described how supportive their brothers and sisters (often older than them) had been. They really appreciated their brothers and sisters not being embarrassed to be seen with them. Several said that their siblings helped with their home treatment and knew when they felt bad.

She and her younger brother have sickle cell but not her sister though she says that her sister knows a lot about the condition and copes well if they are having a crisis.