An eloquent quote from one of our young Camp Purple Live attendees from 2021 reads “It’s not the disease that defines you, but you that defines the disease.”
This ‘call to strength’ epitomises the value of Camp Purple Live; to find knowledge, unity, community and understanding following a diagnosis of the life long and life changing disease which is Inflammatory Bowel Disease.
Camp Purple Live is an annual summer camp; free for the young attendees [aged between 9 and 17 years of age] who share a diagnosis of an Inflammatory Bowel Disease [IBD], namely Crohn’s disease or ulcerative colitis. IBD is a chronic health condition affecting the gastrointestinal tract. For most of the young campers, the chronic, unpredictable course of their disease has resulted in hospitalisations, invasive medical procedures, harsh drug regimens and, for some, major surgeries. Subsequently most of the young people will have experienced absences from school, their leisure activities and their peers which has implications for their wellbeing and quality of life. The delicate balance between managing their symptoms and being ‘controlled’ by their symptoms means that, for many, Camp Purple offers participants a unique opportunity to participate in the activities on offer.
Camp Purple offers an essential component for managing the psychosocial wellbeing of young people with IBD, including fostering social connections with those with both shared and differing experiences. This week-long camp, filled with fun activities offers young people with IBD opportunities to be themselves, safe in the knowledge that those around them ‘get them’. The young people can be confident knowing that there is plenty of medical knowledge surrounding them but having a great time is at the forefront of the many hours of planning that go into the week of activities.
Camp Purple demonstrates to young people with IBD, who have often missed out on school and community opportunities, that they too can participate in activities that can both challenge them and excite them. Consequently, this camp provides essential recreational experiences but also opportunities to develop life-long skills such as resilience, confidence, and social skills. In 2021, each group of campers had a session with IBD Clinical Nurse Specialist and a Registered Psychologist (who has a diagnosis of IBD) to encourage the young people to educate themselves and freely ask questions about their disease. This also provided a safe opportunity for young people to express their unique struggles of living with IBD and explore some of the difficult thoughts and feelings they have. Through this the campers were afforded the opportunity to see that they are not alone, gave them the opportunity to directly give and receive support, and learn from one another about coping strategies that they have developed.
Through these experiences, this camp served to encourage young people to be an advocate for their own mental and physical health, breaking down any perceived barriers by increasing their confidence in interacting with medical professionals. Experiencing the medical team in an informal setting, separated from their ‘hospital’ environment [and in a voluntary capacity] shows the camp attendees that their medical teams cares about their ‘whole person’ and recognises that there is a holistic approach needed for addressing all of the wide-reaching aspects of this disease. If this takes the medical team dressing in costume, telling jokes, getting ‘soaked’ in a water-balloon fight, being dunked by their patients in the water tank or showing their best ‘moves’ on the dance floor, then that is what they will do.
At Camp Purple Live health is viewed in a very holistic and ecological way, recognising that caring for a child with IBD can be a stressful and anxious experience for many families. It is vital to support the immediate and, sometimes, extended family and whānau and so care is extended beyond meeting the individual needs of young people. Seminars and workshops for caregivers are held alongside the camp to provide parents and carers with information and the opportunity for them to connect and develop their own supportive community.
Camp Purple Live is run by Crohn’s and Colitis New Zealand Charitable Trust with the support of charitable grants, personal donations, and generous financial contributions from organisations such as the Freemasons. Without this support, Camp Purple would not happen. Our disease is on the increase in New Zealand and campaigns such as ‘I Can’t Wait’ has brought public and commercial attention to the very real daily challenges faced by people with IBD. By organisations, such as the Freemasons, supporting Camp Purple, our young people with IBD can make life-long memories and practice essential life skills to support them through both their Camp Purple years and beyond, into adulthood.