Living with a chronic condition can sometimes present challenges with regard to going to school, studying, taking exams, going on outings and so forth. Here young people tell us how their condition has affected schooling and some of the personal problems they have experienced. They also talk about how their classmates and their teachers reacted to them. 

School support

Most young people said that their primary and secondary schools have been very supportive. Some remembered their parents going to the school and talking to their teachers and classmates about their condition. Sometimes a nurse came into school to explain about their treatment and also what teachers might need to do in case of illness or an emergency. A few young people said they had been assigned a support worker to help them at school. During exams times some schools were very helpful. One young woman remembers that the exam hall was cold and because of her sickle cell disease they sat her in a warmer room to take her exams. A girl with cystic fibrosis said that she had been able to go on trips with the school because her teachers had learnt how to give her daily physiotherapy. Another young woman who was in hospital at the time she was meant to be taking her A/S level exams said that a teacher came to the hospital so she could do her exams. These young people felt fully integrated int o school life. 

Her primary school accommodated all her needs and made sure she was included. At secondary school some people teased her for taking drugs, which was hurtful.

She had a very supportive helper in secondary school who would get her to the doctors if she had a sickle cell attack.

After his diagnosis he went back to school in a wheelchair. The school and classmates were supportive but he thought he was now known as 'the one with arthritis'.

A few young people indicated that primary schools are better than secondary schools in dealing with students with chronic conditions because they are more caring and there is more supervision. One young man with severe asthma found that not all teachers are aware that his condition is serious and potentially life-threatening. He thinks that this situation is improving now that Asthma UK is working with schools but feels that still more needs to be done. An 18 year old boy with muscular dystrophy explained that he wanted to go to a mainstream school because he had always mixed with able bodied children, but in the two years since his family came to the UK from Pakistan he has not been allocated a school place. 

His PE teacher seemed not to realise the seriousness of his asthma and would sometimes ask him to take part in physical activities even when he was not feeling well enough.

Talks about his primary school experience in Pakistan, his brother's experience in Britain and his mother's efforts to find a secondary school place for him.

School classmates

Teachers can play an important role in helping children understand chronic conditions and what to do if a child needs help. One young woman said that she felt her teachers made more allowances for her, although she tried not to take advantage of this. Some young people said that they had been asked to talk to the class about their condition which had helped others to understand certain aspects of their illness like why they need to take medication in school. Others said that taking tablets or injecting at school landed them with a playground reputation of 'drug takers'. One young woman with cystic fibrosis made a point of explaining her condition to her peers. Once she had told her classmates why she needed to take so many tablets at lunchtime she found that they accepted it as just something that she did. Sometimes young people preferred not to discuss their medical condition with their peers. A young woman with scoliosis laughed when she remembers how she used to deny her condition to others. If someone pointed out that 'you are walking a bit funny', she would reply “Oh, I've just got a problem with my back, It's fine though” and I would limp off. It was quite funny actually.

When she moved school she initially had a bad experience but her teacher encouraged her to give a talk to her class about her diabetes. Her new group of friends is very supportive.

Some said that when they were at primary school they had experienced some bullying in the form of name calling, which could be upsetting. Several young women said they had had a difficult time at secondary school. They said that their class mates rejected, ridiculed and even laughed at them. Some lost friends after their diagnosis or because they looked different from other teenagers. A boy with ME said that he did not get a lot of sympathy at school and knew that many of his schoolmates thought that he was faking his illness. Some of his parents' friends even thought he was pretending to be ill because he was bullied at boarding school and did not want to go back.

Her condition affects her facial features and when she moved schools some classmates bullied her but with the support of her mother and new friends she has been able to cope.

When feeling ill he becomes emotional and tends to cry. His fellow students at his all male school found this 'weird'.

Missing school

Pain, tiredness, a worsening of physical symptoms and going into hospital can all contributed to disrupted attendance at school. Sometimes these disruptions are of a few days but in other cases several weeks may pass before they are well enough to go back to school. One young woman said that her epilepsy sometimes affected her school attendance but if she controlled her triggers epilepsy didn't really affected her studies. On the other hand, a young man used to miss school for several weeks at a time following an asthma attack and he had to do a lot of catching up when he felt better (see also 'Looking after yourself: getting the right balance').

She has a few ideas about how schools could help young people with chronic conditions not to miss their education. Thinks that it is a good idea for nurses to visit schools.

Several young people found it very difficult to attend school on a regular basis during a worsening of their condition. A young woman with arthritis whose treatment was not working was in a lot of pain so her doctor arranged for her to have tutorials at home. However she only had four hours tutoring a week which she said was not nearly enough. One of the young men with arthritis had to have several operations as he was growing up and hence lost months of schooling. Altogether this amounted to 'years of school absences'. 

Because she had so many physical problems she was off school for a year and a half. She has memories of her school life before she was diagnosed with arthritis.

Wasn't able to do her GCSE exams but she was graded according to her coursework. She then went on to have a kidney transplant and has had to delay finishing her education.

Several young people who missed a great deal of schooling felt that their secondary schools let them down. The main problems have been failure to provide school work for them while they were in hospital, or to properly supervise their progress. A young man with asthma said 'it is as if they don't care'. A young man with muscular dystrophy has been waiting for two years for a secondary school place. His mother tried to talk to the relevant people but without success.

On those occasions he has been in hospital his mother and other relatives have approached the school asking for coursework. Despite reassurances they did not send him any work.

One young woman who went to a small private school said that even though she had spent time in hospital her teachers were always helping her to catch up with her work on her return to the classroom. She thinks that her experience would have been different if she had been in a large urban comprehensive.

At the age of 11 started to attend a private secondary school and despite spending time in hospital was always given help catching up with her school work. Left school with three A-levels.

Achieving educational goals

The young people we talked to are motivated to make the most of their educational years despite their conditions and physical problems. Most had either left school with qualifications such as GCSE's, GNVQs or A-levels or were still in school or colleges of further education and planning to go to university. For several young people the achievement of educational goals has been a turning point in the way they deal with their medical conditions. They had realised that educational accomplishments is something they could control. In spite of this many said that it is hard doing the catching up after been in hospital or concentrating in class when you are feeling ill or in pain. One young woman told us that she could not follow her first choice of career because of her condition but she still plans to go to university. A young man said that he thinks that as a disabled person he needs to be extra well prepared for the labour market.

Early on he decided that as a young disabled person he would need all the qualifications he could get to have a better chance of getting a job.

Her epilepsy affected her memory and it was hard to do her Spanish A level course. Some of her teachers have been very supportive. She is now doing an Art Foundation course.

Last reviewed April 2010.

Last updated April 2010.