A message from Founder and CEO of RAiISE, Sophie Ainsworth
“As so many of us know, when you are ill, it is vital that you receive support from those who you usually trust. Your doctors, family and friends are all extremely important in helping you to cope with your illness and to help you feel as healthy as you can. Young people spend so much of their time in school or college that it is only natural that the same level of understanding and care is expected to be provided by members of staff. Unfortunately, I did not have this experience.
I first showed symptoms of illness in when I was 14 in Autumn 2013 and in April of the following year, I was diagnosed with Lupus. Lupus is an autoimmune disease in which the body produces too many antibodies, causing damage to any part of the body. Joint pain made it difficult for me to walk or write, chest pain and breathing difficulties made me struggle moving around and lack of sleep as well as fatigue made it difficult to concentrate in lessons. All in all, daily life was difficult but sadly it was made even harder by the lack of support from my school. I got many upsetting remarks from several teachers including accusations of ‘skiving’, questioning whether I should be allowed to use the disabled lift; not to mention the frequent letters regarding my attendance.
Looking back on my time in school, I decided to do something about it in hopes of reducing the number of people who have to endure similar things. Therefore, I have started a project with the help of Alder Hey Children’s Hospital which aims to help raise awareness of illnesses which are ‘invisible’, as I have found there are so many people who, despite looking perfectly healthy, are feeling very unwell. RAiISE (Raising Awareness of invisible Illnesses in Schools and Education) will help to make school staff aware of these illnesses and give them tips and support on how they can help.
RAiISE was registered as a charitable incorporated organisation (CIO) on 15 November 2018. One of the first core projects for RAiISE in 2019 will include the pilot implementation and evaluation of an information pack, with simple pointers which will show staff good ways of helping young people with invisible illnesses in a way which will be most beneficial for each individual, as everyone’s illnesses, care requirements and coping strategies are different. There will also be an accompanying video which will explain similar things to the information pack, with stories from young people who have lived with invisible illnesses. RAiISE is very much a social movement, whereby I hope to empower as many young people as possible to visit schools in their local area, giving short talks or workshops to the staff in which they can personally explain issues they have faced and things that need to change. I feel this will be a lot more personal and convincing and will make the largest amount of difference.
I hope you’ll join me on my journey, as we RAiISE awareness and support for those with invisible illnesses.”
Founder and CEO, RAiISE