Lupus is an autoimmune condition which can cause a whole host of symptoms. For Sophie, this included extreme fatigue, arthritis, breathing difficulties and chronic pain. It resulted in many hospital stays within the first few years of diagnosis, all while trying to navigate school and GCSE years.
Sophie often found that her condition was misunderstood and felt some of the problem was that the condition was in some ways ‘invisible’.
Despite feeling incredibly unwell most of the time, she looked like any of her healthy peers. This often led to misunderstandings from her teachers and peers. While at school, Sophie felt a lack of support and was called out for poor attendance, struggled to participate in certain lessons such as PE and didn’t have regular access to the lift when finding it difficult to walk.
After leaving school, Sophie decided to do something about this and find a way to ensure better support was available. It started with a simple meeting between a group of young people in Liverpool, aged between 5 and 18, with a variety of different conditions.
They shared their experiences – both good and bad – with each other. They talked about positive measures their schools had implemented, and the things that needed to change. It allowed us to see common themes and gaps in the system, which gave the grounding to begin creating our resources.
RAiISE believes that young people, teachers and health professionals can work together to ensure everyone has the right support during their education.
Our young people are and always be at the heart of RAiISE and everything we do is led by them. We are looking forward to continuing to work with our community to identify and tackle the issues facing young people with invisible illnesses.