Young Person Led Project – Living with an invisible illness

By Liverpool YPAG,

Sophie and her mum

Sophie and her mum

Blog by 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 difficulty 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 remarks from several teachers which I found upsetting such as accusations of ‘skiving’ intense Army Training Day in the week of my diagnosis; 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 recently 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 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. With this project I hope to make school staff aware of these illnesses and give them a few tips on how they can help.

The project will begin with a simple 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 pupil as everyone’s illnesses, care requirements and coping mechanisms are different. There will also be an accompanying film which will explain similar things to the information pack with stories from young people who have lived with difficult conditions. Finally, I hope to have as many young people as possible visiting schools in their local area and giving short talks or workshops to the staff in which they can personally explain issues they have faced and things we want to change. I feel this will be a lot more personal and convincing and will make the largest amount of difference.

At the end of last year, we had a small meeting with a few volunteers who shared their school experiences and I learnt a lot about what different people had gone through. (read the report here). It was an excellent starting point and taught me that this really is a big issue that needs to be resolved. I hope that as many people as possible will be willing to get involved and help ensure that a person’s school life does not pose more problems than their health already does.


If you wish to get involved, please contact me at