Aim Many people who live with a chronic illness, which includes living with chronic pain often don’t look different from the healthy people all around us. Not having a visible disability can often lead to living with a largely invisible struggle, which includes living with a long list of misunderstandings and there is a huge burden on those chronically ill to make the invisible visible to others. Living with this burden is extremely difficult for young people and developing support and coping strategies are required. The aims of the project was to explore the impact of what it means living with an invisible illness and to assess what support young people need.
Methodology A young patient of Alder Hey NHS Children’s Foundation Trust decided to raise awareness of living with an invisible illness by contacting patients through various routes including Alder Hey and college contacts. Over 30 young people expressed an interest in the project. Four young people and two parents attended the focus group, which was led by the young person. Consent was taken for the session to be audio recorded and transcribed.
Results The young people had varying degrees of experiences of what it was like living with an invisible illness, including feelings of isolation, low self esteem, frustration, unhappy, accused of laziness and ridiculed by staff and peers. It was the first time many had voiced their feelings and felt that raising awareness of these issues would ease the burden for other young people.
Conclusion Young people felt it was a really important topic and appreciated the opportunity to get together with other young people living with invisible illnesses. The group highlighted several priorities to take forward, which include: holding a workshop with young people, teachers and parents to discuss the issues further; develop an online forum for young people to chat to each other about their experiences and concerns; develop information about what it is like living with an invisible illness and a possible resource for teachers to support young people and encourage young people to deliver talks to school staff.
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