Long term health conditions

Dealing with feelings and emotions

Being diagnosed with a long-term illness at a young age can be particularly hard. Most of the young people we talked to felt it was unfair and often wondered 'Why did it have to happen to me?' Some medications have side effects that can affect both the way you look and how you feel. Pain or physical problems meant that many were not able to do the 'normal' things that young people wanted to do (see 'Pain and physical problems'). This left them feeling alone, frustrated, angry, anxious and, in some cases, even depressed or suicidal. 

Many young people with long-term conditions said that they always felt different from other teenagers because they couldn't do the same things or because they were very conscious about the way they look. Some people who'd had their condition all their lives said that because they had never known anything different so they did not feel these problems as strongly. 

Living with a long-term condition can make you feel down, lonely, different and depressed. It is perfectly normal to go through those feelings even after years of living with a condition but it can be particularly difficult for a teenager because they naturally tend to experience more mood swings and may not find it easy to talk about feelings. Sometimes schools and services don't seem geared up to support young people who have long-term health conditions. 

Some young people have had to deal with knowing that their life may be cut short by their illness. For example, people with cystic fibrosis (CF) often find out when they are teenagers that the average life expectancy for someone with their condition is about 40 years old. (This means that according to the statistics "Now half of those with the condition in the UK will live to celebrate their 40th birthday, and a baby born with the condition today can expect to live even longer" - Cystic Fibrosis Trust July 2017). They initially felt shocked and in despair and some thought “What's the point?” and temporarily stopped taking care of themselves. One young woman with CF said that she had then started to think that the “average is just an estimate” and became determined to live to a 'ripe old age'. Family, friends, doctors and nurses could all help people to come to terms with having a limited life expectancy. A young woman who used an internet chat room liked being able to tap into the experiences and wisdom of other patients without having to talk about her emotions face to face. 

Learning to be positive

Young people also talked of approaching these differences in a positive way. Some see their condition as making them more mature and emotionally stronger. They talked of 'making the condition work for them'. One very important way of feeling (and staying) positive is to focus on personal objectives such as holidays, friendships, looking after yourself, completing your schooling, going to university or competing in sport events. Having a series of goals to focus on can be really helpful in overcoming problems.

Some young people said that another thing that has helped was 'spirituality' and 'a belief in God'. We talked to Christians and Muslims who said that believing in God gave them hope and kept them positive.

Talking to parents, grandparents, friends, praying, being part of a religious community, raising funds for charities were all mentioned as helping people to live well and accept their illness. One young woman attended sessions with a psychologist to help her live with chronic pain, although most young people thought that it would have been very useful to talk to someone their own age following their diagnosis (see also 'Information and support' and 'Dealing with the family').

Several of the young people we talked to stressed that a change in attitude helped them to cope emotionally. Accepting the condition and working with it rather than denying or ignoring it helped them to have more positive thoughts about their illness and life in general. Some of the advice that they had included:

  • Follow your own expectations about what you can do, not other people's
  • Do what you think is best for you
  • Don't feel that you have to apologise for your health - it is just the way you are
  • Be yourself all the time
  • Appreciate what you can do and don't take it for granted
  • Do what your peers are doing but accept your limitations
  • Be independent but learn to accept help when needed

Young people stressed that to 'learn to think more positively' is not easy and takes time. They explained that when you live with a chronic (long-term) illness there will always be times in which you are ill or in pain. There are issues such as fertility, remission or life expectancy that you will always be concerned about, even when you have reached a happy medium. People said you have to build yourself up again, to gain strength and fitness, and to develop a 'feel good' attitude. Looking back, some realised how much their condition has affected them. They said that as time passes your condition may get easier to deal with, but in the end you have to learn to live with it and accept that it is part of who you are.

Last reviewed July 2017.

Last updated July 2017.


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