Fig. 2

The illustrated Rollercoaster Metaphor. This visual creation was developed after considering the journey which young people were describing. The downward track in the beginning as they began to get unwell from the Juvenile Dermatomyositis and the confusion from not knowing what is wrong. Then some relief and a journey up the rollercoaster as they finally get a diagnosis and a name for their symptoms, something which they can research and tell family and friends. This is followed back down the track as the realisation that it can be a serious condition, often at this stage accompanied by active, painful disease as they wait for treatment therapies to begin. Then back up the track as the treatments have started and they begin to feel better, maybe become able to move more and regain some strength. The rollercoaster continues like this as each young person described the seesaw of emotions, feelings and symptoms as they travelled on their JDM journey. The rollercoaster ride can go on for many years, with young people having ups, downs and plateaus from day to day and month to month, even year to year. This depiction can be used as it is shown, or modified to meets the needs of individual children, young people and their families in clinic to illustrate the rollercoaster and to help alleviate some of the unpredictability, confusion and increase their knowledge and understanding; preparing them for the future