By Naomi Clarke
Durham University student Sophie Ainsworth, who campaigns to raise awareness of invisible illnesses in schools and education, has been honoured by the Prime Minister Theresa May with the ‘Points of Light’ volunteering award.
Sophie, 19, an English literature undergraduate, founded the Raising Awareness of Invisible Illnesses in Schools and Education (RAiISE) project, after being diagnosed with lupus at age 14.
Over 11 million people have a limiting long-term illness, impairment or disability in the UK
Lupus is an autoimmune disease which causes the body’s immune system to attack a person’s own tissues and organs. This can lead to joint pain, making it difficult to walk or write, chest pain and breathing difficulties, and serious fatigue. These issues and a lack of support from school can render daily life a challenge.
Sophie told Palatinate that she faced an all too familiar situation for many students with invisible illnesses. She was seen as “lazy” and had “many complaints about my attendance but in reality, I was just really unwell.” She noted how she “spent a lot of time at the hospital and when I was able to make it in, the lack of support made the situation even more stressful.”
A 2015 report showed that there are over 11 million people with a limiting long-term illness, impairment or disability in the UK. Many impairments are not immediately visible. Sophie used her experience as the drive to make a change. Shortly after leaving high school she founded RAiISE, an organisation which aims to empower those with an invisible illness to “take control of their own health”.
RAiISE aspires to “improve the standard of care given to young people with invisible illnesses in school, college, and university”. They also plan to create educational resources to teach education professionals a series of strategies and techniques in order to support affected students. These will include booklets and providing training sessions on subjects such as Mental Health First Aid, hopefully, to be piloted in the Spring.
Your organisation is challenging the misconceptions of invisible illnesses and giving young patients and their families invaluable support.
This work has been recognised by Prime Minister Theresa May, who in a letter to Sophie, said: “The Points of Light programme recognises outstanding volunteers who are making a real difference in their communities.
“Through RAiISE you are changing the mindset of teachers and peers who misunderstood your lupus diagnosis.
“Your organisation is challenging the misconceptions of invisible illnesses and giving young patients and their families invaluable support.
“Up and down the UK volunteers like you are helping to build a country that works for everyone. The Point of Light award is a small thank you on behalf of the whole country, in recognition of your exceptional service.”
In response to receiving the reward, Sophie told Palatinate “I’m so excited about the award and for my work to be recognised at such a high level. It’s vital that we get visibility for so many conditions which are ‘invisible’ and hopefully receiving this award will be a fantastic step in the right direction to achieving this.”
Sophie is a member of Josephine Butler College, Durham University. The college Principal, Professor Adrian Simpson, said that: “Everyone in the College will be very proud of Sophie’s achievement. The award she has received is not only apt recognition of her efforts but will inspire all our other students and staff who undertake volunteering and charitable activities in the local community and nationally.”
“I’ve had brilliant support from the university disability services, as well as my own department who have put in a place a lot adjustments.”
Sophie noted that university life was a “huge challenge”, especially for someone with a chronic illness; “There are definitely difficult days with balancing workload and all the social aspects of uni, but it’s all about learning about your body and knowing your limits.”
Moreover, Sophie told Palatinate: “I’ve had brilliant support from the university disability services, as well as my own department who have put in a place a lot adjustments. Most importantly for me is that I have understanding from my tutors.”
Photograph: via Sophie Ainsworth