Long term health conditions (young people)

The young people interviewed talked about the types of, and triggers for, the physical problems they experience and the affect these problems had on their daily lives. Chronic tiredness/fatigue is a common feature of many long-term illnesses. The different ways that young people cope with physical problems are discussed further in another topic summary (see 'Looking after yourself: getting the balance right'). 

Everyone we talked to reported a number of physical problems relating to their condition which were either apparent before the diagnosis, or appeared during the illness. Pain, fatigue and other physical problems can make you feel different from other young people; which raises worries about not being “normal” (see 'Dealing with feelings and emotions').

Pain was a common problem and people described how it made them feel both physically and emotionally drained. Some discussed episodes of pain in terms of “flares”, “crisis” or a “bad phase”. Pain and tiredness often go together because pain makes it hard to sleep, or even rest or sit still. Conditions that have periods of relapse and remission make it hard to predict how people might feel at any particular moment and can be particularly frustrating (see also 'Going out').

Pain and tiredness can also make you feel angry, upset and frightened as well as 'ratty and irritable' with friends and family. People said that when they had pain they just want it to go away so that they could feel 'normal again'. 

Young people also described several other physical problems that were more specific to their condition or illness. These included difficulty walking, breathlessness, fevers, joint stiffness and memory loss. A young man with hypoplastic left heart syndrome explained how this affected his everyday activities.

Feeling tired or fatigued has other causes apart from pain. For instance some young people noticed that particular medications made them feel tired while others reported tiredness as an after effect of an epileptic fit or seizure. Everyone said that it is very difficult to maintain a normal routine when tired because it affects your concentration, how you relate to family and friends and your moods. 

Physical problems certainly do not always stay the same - some people found that as they grew older the problems seemed less severe, changed in other ways, or became worse. 

One young man with arthritis explained that the physical problems he experiences today are due to the damage already caused by the condition rather than the ongoing inflammation of active arthritis.

A number of common triggers made people's conditions worse. These included lack of sleep, tiredness, stress, smoky places, drinking a lot of alcohol, not taking medication and cold weather. For some people with conditions that affect their lungs (e.g. asthma, cystic fibrosis), taking exercise without medication could make things worse. One young man with asthma said that he had learned that he needed to behave responsibly to avoid attacks. Another, with a heart condition, explained that he was not able to run as many laps as his school mates in sports lessons.

Young people find it difficult to always avoid situations that they know could exacerbate physical problems either because they have no control over them or because they - like any other young person - have plans and goals to achieve, including the desire to have a social life. Many are studying and busy preparing exams and coursework at university, college or at school level; others are working, or looking for work, or working and studying at the same time. One young woman we talked to is raising a family. So the young people we talked to were experiencing demands and stresses that could have a bad effect on their condition. 

Many tried to minimise situations that they knew would make their physical problems worse. For instance, during exam times they would only go clubbing on special occasions (e.g. to celebrate someone's birthday) or they would make a special effort not to forget their medication when going out or doing sports. It can be hard to strike a balance between doing what they want to do and avoiding or minimising triggers (see 'Looking after yourself' getting the balance right').

Many of the young people had experienced situations when, despite medication, they had been unable to control their physical problems. Sometimes physical problems happen without clear causes or triggers or, as a young girl said, 'just out of the blue'. Some described those episodes as 'scary', 'frightening' and feeling like 'losing control'. A young woman who had a very rare procedure for her cystic fibrosis explained how alarmed she was.

Last update May 2014.