Being diagnosed with a chronic illness at a young age can be  particularly hard and 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 affect both the way you look or 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 isolated, frustrated, angry, anxious and in some cases even depressed or suicidal. 

Sometimes she feels depressed about her sickle cell disease when she is ill and in pain.

Feels less happy than before she was diagnosed with epilepsy at age 9. She feels sad about her memory problem.

She felt isolated when she was not talking to anyone about her epilepsy.

She was angry with her body for causing her illness and went through a very down period in which she started to self-harm. Her mother, nurses and friends helped her pull through.

Many young people with chronic conditions said that they always felt different from other teenagers because they couldn't do the things that their peers were able to do or because they were very conscious about the way they look. Some people who had had their condition all their lives said that because they had never known a different life they did not feel these problems so acutely. 

He remembers feeling different to his peers in primary and secondary schools because of his arthritis. He also felt frustrated by the pain and having to rely on people.

He was diagnosed with arthritis at 2 years of age. Suspects that it must be worse to be 'normal' and then diagnosed in your teens.

She used to feel different when she could not join in activities because of her sickle cell. However people do tend to be kind and helpful towards her because of her condition.

Living with a chronic 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 when you are a teenager because you tend to experience more mood swings and may not find it easy to talk about your feelings. Sometimes schools and services do not seem geared up to help young people who are having difficulties coping. 

He felt excluded and lonely when he was having treatment at boarding school and eventually became so depressed that he thought of stopping his dialysis.

Enjoys playing football and finds it frustrating if he is not able to play at school.

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 thirty one years. 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. 

Had a hard time when she found out about her life expectancy but found talking to other young people through the Cystic Fibrosis Trust internet chat room very helpful.

After she finishes her degree, she plans to do a PhD and her goal is to become a university lecturer. Says that her doctors, nurses, family and friends have helped her to keep positive.

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.

She felt depressed for much of secondary school but has now learnt to focus on a series of goals and feels much more positive.

Says that she found it easier to cope with other people when she went back to university on a part-time course.

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.

It is hard living with muscular dystrophy but he refuses to give up. He is writing a book about his life including how as a Muslim he lives with his condition.

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. Only 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 young people 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 found helpful are:

• 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 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 April 2010.

Last updated April 2010.