A young Lupus sufferer is calling on teachers to better understand invisible illnesses.
Sophie Ainsworth, 19, has teamed up with Fixers to make a film showing how it feels to have an illness that people can’t see or don’t understand.
‘It all started from my own personal experience, I was diagnosed with Lupus when I was 15 and had a really tough time at school,’ explained Sophie, from Lancashire. ‘I established that the reason a lot of people were misunderstanding why I had to take time off or why I wasn’t performing well was because I looked perfectly healthy.
‘There are so many illnesses like Lupus that are invisible, whether that’s mental health problems, diabetes or epilepsy.
‘There’s a huge array of conditions which can’t be seen but cause a huge problem for so many young people.’
Lupus is an invisible illness where the immune system works in overdrive and causes joint pain, fatigue and sickness.
Sophie received letters about attendance from her school after notifying them she would be absent whilst in hospital.
A specialist nurse at Alder Hey Hospital offered to manage all communication between the family and hospital to ensure no additional stress would be caused to Sophie and her family.
‘I received letters about my attendance which made an already very stressful situation a million times worse,’ explained Sophie.
Sophie found her peers very supportive and concerned in comparison to teachers who assumed she was skipping school for no good reason.
‘I didn’t feel like I got the support I needed from the teachers. I would constantly be having problems with them telling me my attendance wasn’t good enough and that my grades were going to drop,’ explained the
Durham University English student. ‘I was always a very good student throughout my time at school my teacher’s perceptions of me seemed to change.
‘I was accused of being lazy and skipping PE because I didn’t like it and not because I physically couldn’t take part.’
After Sophie finished school she set up a small charity called Raiise. The organisation is dedicated to finding better teacher training strategies and providing extra support for young people with invisible disabilities.
Sophie added: ‘The charity aims to make people aware that even though you might look healthy it doesn’t mean you are.
‘You never know what people are going through and talking to each other is a great way of getting support and breaking down the concept of feeling like you’re on your own.’
To find other resources on this topic, and watch Fixers films, click on the image below.