• Talk to someone. Talking may help you feel better and help you learn other ways to handle problems. Keeping your feelings bottled up inside can make you feel worse. Talking to friends and family helps them know how you feel and allows them to try and help you. It may be helpful to talk to someone who is specially trained to assist with the social (friends, school), emotional (feelings) and practical (financial) problems brought on by your lupus such as a social worker or psychologist.

• It may be helpful to think in advance about things that could leave you vulnerable to a flare such as stress from exams, changing schools, starting a job. You can then work together with your family/friends/school to work out a plan to manage in advance, rather than trying to pick up the pieces after a difficult time. Developing resilience (the ability to bounce back after a tricky time) is important. It is about coping strategies that you can use in all areas of your life,not just in relation to your health. Knowing what helps to lift your mood (as well as what brings it down), knowing who you can turn to for help and when to do so, as well as managing your time are all important skills to develop.

• You may also want to contact other patients with lupus - you can contact LUPUS UK, which is a charity that supports people with lupus (01708 731251) or ask a member of your medical team. All of these calls will be treated in confidence.

• Talk to your doctor or nurse in confidence. Knowing your medical team knows how you feel and that you’re not alone can be helpful. It may be possible for them to arrange for you to meet other patients with lupus.

• Continue to be involved in the activities you enjoy, but also look for other interests, which may use less energy. You shouldn't have to give up sports or other activities in or outside of school, although occasionally you may not be well enough to take part. It is important to change as little as possible in your normal routine. Feeling good about yourself can help lessen negative emotions you may feel.

Here are some ideas on how to look and feel better:

• Cover skin rash with makeup/foundation - there are specialist services (see Red Cross in the contact listings at the end) that can help you.

• Use special cleansers and soaps to help your acne. If these don't work speak to your doctor who can prescribe a stronger cream.

• If your hair is thinning use a mild shampoo, try not to wash your hair every day, and don't use rubber bands or clips that may pull your hair. Avoid colouring your hair and using heated appliances e.g. hair straighteners too often.

• If your face looks a little rounder due to prednisolone try a hairstyle that pulls attention from the cheek and jaw area. You can get advice on styles, which would suit you from most hairdressers.

• Recognise your strengths and be proud of yourself - living with a long-term condition is not easy. Make a list of all the positive things you can think about yourself. Ask others to help you.

• Have a 'cheer up' box to help lift your spirits - with your favourite music, video, photos, etc - things which you enjoy and mean a lot to you.

Jake's story

When Jake was 6 weeks old his mum put him on the balcony of their Liverpool flat to get some fresh air. She looked at him five minutes later and noticed that his nose had got quite badly sunburnt. She thought she was a bad mother for having let this happen.

He regularly caught lots of colds and other illnesses, but even so he was always happy. They would visit the GP, who usually said, " He's got a virus". His Mum, Debora said "I knew something was really wrong with Jake when he was five, as he was quite poorly, lost a lot of weight, and the rash across the nose kept coming back. So I asked for him to been seen at the hospital".

Whilst waiting for the hospital blood tests to come through she went to the library and looked up 'rash on the nose' on the internet. The response was instant: butterfly rash and lupus. When they saw the hospital consultant she immediately asked if Jake had lupus, the doctor was astounded and asked how she knew. "I felt so angry that the doctors hadn't known what it was when I'd done a simple search on the internet and found out!"

Jake had to miss a lot of school for a couple of years following his diagnosis at six, but now at 13 he is back at the right level and doing well with his studies. His motto is 'work hard, play hard'. "He's got a cracking set of very loyal friends - they understand about his illness and are there for him, but if one of them isn't well they stay away from him as they know how easily he picks up infection and that can make him really ill", says Debora.

Jake would rather not have lupus, but he doesn't complain about anything: "'I've been through so much it's made me strong. Don't let it beat you or get you down. Stay strong. I keep out of the sun and always slap sunscreen on every day as the sun is out there, whether you see it or not".

His advice to others is "It's good to have a lot of friends because they make you feel better. You've got to get on with life. Don't forget to take your medicines and ask people to keep away when they've got colds, so that they don't pass it on to you. There are people out there who understand this illness. Give yourself an activity to get involved in, like football or basketball."