Long term health conditions

Looking after yourself: getting the balance right

All the young people we talked to have had to learn to do certain specific things on a daily or regular basis in order to look after themselves in relation to their condition. This included taking medication, monitoring symptoms, doing exercises, wearing special appliances, having daily medical treatments or specialist help. Young people talked about what it's like to look after themselves, what helps, what problems they have encountered and what motivates them.

It can be hard to get used to the idea of including some specific 'self-care' patterns into daily routines. Some had felt apprehensive at first and afraid about doing things like injecting insulin or changing the dosage of their medication. People were also sometimes unsure what they should or shouldn't be doing or saw the condition as stopping them from really living their life as they wanted to. It is also hard to get used to the need to organise and plan before making any changes to daily routines. Most young people pointed out that maintaining the 'right balance' between doing what you want to do and what you should do, can be difficult. 

Most mentioned four general “tactics” for self-care: 

  • Plan your activities ahead
  • Listen to your body
  • Pace yourself
  • Get enough rest and sleep 

Some said that these tactics have helped them to feel more in control of their condition and physical problems. Some had learnt these tactics from other people with long term conditions, although the importance of some - like 'getting enough rest' - were obvious to everyone.

Many commented that self-care is particularly difficult for teens. As teenagers, they wanted to do what their friends are doing and not to feel different. Some neglected their daily exercises, or did things that made their physical symptoms worse - like drinking alcohol, skipping meals, not taking medication or not wearing warm clothes. Many said they had learnt from their own experiences and commented on the importance of 'tough love' from parents and getting a 'good nagging' from their doctors! 

Understanding and confidence about how to look after yourself is often a gradual process. Parents and doctors can help young people to understand the need to look after themselves and the serious consequences if they don't (see 'Getting on with your healthcare team', 'Talking to doctors and nurses', ' Transition from children's to adult services/clinics' and 'Dealing with the family'). Learning how to cope with physical problems such as pain can really help young people feel some control over their illness. The down side of taking responsibility for your own health is that you might end up blaming yourself if you get ill again - even if it will really not, in most cases, be because of anything they have done.

We were told about the various techniques used by young people to help cope with their physical problems such as persistent pain and tiredness. These included breathing and relaxation techniques, making daily activity charts, physiotherapy and exercises. A few had sought specialist help such as attending sessions with a pain psychologist or having complementary therapies (see 'Finding the right medication'). A person with ME/CFS said that he thought taking homeopathic remedies had helped control his headaches, coughs and colds.

People who needed to use wheelchairs, or other mobility aids, described how this helped them to be more independent. One person who requires full time care emphasised independence of the mind as an important aspect of self-care. 

Everyone felt motivated to keep well in order to accomplish their goals, dreams and projects -whether these were in their social life, work or at school or college. Making the most of life and not 'wasting time' by being ill was seen as really important. Some people were very much encouraged by seeing how other people managed and stayed positive despite having much worse physical problems. 

Keeping well also means maintaining some independence and learning to “work with your illness and not against it”. A young woman who had recently stayed out late dancing knew she would feel bad the next day but also knew how to make herself better. She said, “It was worth it because I'd had such a good night out… you can't be an angel all the time… sometimes it's about striking a balance”.

Last reviewed July 2017.

Last updated May 2014.


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