LAUSR

FLUCTUATING CHRONIC DISEASES Unpredictable fluctuations, episodic deteriorations and flares are common in many paediatric chronic diseases, for example, asthma, type 1 diabetes mellitus, juvenile idiopathic arthritis (JIA), epilepsy, systemic sclerosis, cystic fibrosis, inflammatory bowel disease and sickle cell disease. For many children and adolescents, their chronic disease is not a steady state of illness. On the contrary, a continuous ebb and flow of symptoms interferes with functional and social daily life. These fluctuations constitute a difficult challenge to patients’ ability to selfmanage their disease, fundamentally different from more predictable illness patterns. In this Viewpoint, we—three professionals and three young adult patients— argue that the existing selfmanagement programmes for children and adolescents with chronic illness and their families do not sufficiently prepare them to respond to these mostly nonmodifiable fluctuations. In our view, the existing focus of most selfmanagement programmes on the acquisition of skills to control presumed continuous symptoms might even be counterproductive. Young people with chronic disease have a strong desire to be like others, to fit in and to be accepted by their peers. The fear of rejection and the stigma associated with their condition often prevents them from disclosing their illness. In ‘good’ periods, there seems to be no reason for disclosure. Periodically, however, they may experience temporal deteriorations of their disease. The worsening of symptoms and their incapacitating effects disrupt normality and their daily life, leaving them with less control over what activities they can engage in. During these ‘bad’ periods, even the most skilled adolescents may be defaulted back to parental care and support. Being unable to anticipate these disease fluctuations and flares contributes to a broader perception that they lack control over their lives. 3 Young patients living with JIA, for instance, believe themselves to be “trapped in a perpetual limbo, oscillating between having a sense of control over their bodies and losing all control as moments of intense pain overwhelmed them”. They feel that others do not recognise the seriousness and unpredictability of their arthritis flares. Many patients with JIA are deeply frustrated and hurt by the lack of empathy and understanding from peers, school personnel, family members and team mates in sports. This is described as the worst thing about living with JIA. The patientauthors of this Viewpoint endorse this from personal experience. It does not only apply for JIA (online supplemental material). Clearly, learning how to deal with mistrustful healthy peers is one of the most important selfmanagement support needs for many young people suffering from fluctuating diseases. 4