Long term health conditions

Taking and not taking medication

People who started treatment when they were children initially had their drug routines overseen by their parents, but as they got older they took over this responsibility themselves. Parents found various ways - some subtle and some not so subtle - to encourage regular use of their medication. 

Medication may also need to be taken when people are in remission or feeling well- one young man commented that he saw his drugs as a 'safety net'.

There are several (related) reasons why young people may not take their medication. These range from 'just forgetting' to consciously deciding to stop. Young people in their early twenties sometimes told us that when they were teenagers they had gone through a stage of feeling negative about their condition and thinking it was unfair that they had to take care of it. Having to take tablets and deal with side effects, such as putting on weight, as well as, on occasions, worsening physical symptoms, made them feel different from other young people. They sometimes felt miserable or depressed (see 'Feelings and emotions') and asked themselves 'Why do I have to take tablets?' or 'Why do I have to do these exercises?' One young woman commented that it is hard for doctors to know whether the young person is deliberately not taking their medications, or whether they are just forgetting because they are disorganised (which doctors sometimes seem to assume to be the natural state of teenagers). She was aware that her parents knew when she stopped taking her drugs because they could see that her bottles remained full.

In some cases young people said they had thought that if they took painkillers it meant that they were weak and could not cope with pain. Others said that they couldn't see the actual benefits of their treatments and thought that they could manage without the medications - although after experimenting with not taking the drugs they often found that they were far better off with them. A woman with sickle cell disease said that she didn't like having to wake up every day and take medication. A young woman who discovered that she had a limited life expectancy said she 'rebelled' and stopped her treatment for a while. 

As they got older, young people said they gradually shifted both their behaviour and the way they thought about their illness. This process was greatly assisted by the support and sometimes the 'nagging' they got from parents and doctors. A young woman said that growing up and becoming 'less selfish' was an important reason why she decided to take control of her treatments. 

Young people also sometimes 'prioritise' when it comes to their medical treatment(s). Some chose not do certain things like physiotherapy because they felt that they didn't need it. Others indicated that if they are in a hurry they will do the treatment that makes them feel better and perhaps leave the others for later. 

Long term side effects

Young people were sometimes worried about the possibility of long-term side effects from their drugs. For example some drugs for epilepsy can have an impact on fertility and pregnancy (See 'Contraception and pregnancy'). Young people weren't always reassured by their doctors and worried that the doctors didn't know about all the long-term side effects. A young man with asthma had been told not to worry about taking medication but he said 'If you're on that much medication you have to worry'. He was concerned that he might become in some way 'dependent' on them and that if he had to take more tablets it meant that he was getting worse - but had not yet asked his doctors about his worries.

Last reviewed July 2017.

Last updated February 2012.


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