Living with an invisible illness – Part 2

By Liverpool YPAG,

Blog by Sophie Ainsworth

Back in January, I wrote a blog post about my experiences with having an invisible illness and how much it can affect my day-to-day life. I also introduced a project I am working on with the NIHR Alder Hey Clinical Research Facility (CRF) and Alder Hey NHS Children’s Foundation Trust to raise awareness of invisible illnesses within schools. I am very excited about the project’s progression and I’m looking forward to where it is heading.

Sophie and her mum

Sophie and her mum

Since January I have spent a lot of time trying to let as many people as possible know about the project and try and get many people on board. This has gone very well and I am so pleased to have a group of young people, parents, teachers and healthcare professionals all so eager to help. I have spoken to a lot of young people, all with various conditions, who have had similar school experiences as me. It is reassuring to know that I was not alone in having to fight many battles in order to get the support I needed. Conversely, I have met many young people who have had very positive experiences at school. These people will be vital in providing an example of how to care for students with invisible conditions.

Since sharing my first blog post a few months ago, I have had a lot of positive response from a lot of people. I was kindly invited to speak at the Cross Your Own Oceans event for Findacure. There I met several lovely and inspiring young people and their parents who had all had, or were still having, similar experiences. I am also excited about being given the opportunity to speak at the Annual Royal College of Paediatric and Child Health (RCPCH) conference at the end of April. We are even hoping to expand the project internationally over the course of the year. All these things are incredibly exciting and will hopefully generate more and more interest in the project so that we are able to help as many young people with invisible illnesses as possible.

On Saturday 9th April, we will be hosting a workshop day in the Institute in the Park at Alder Hey Children’s NHS Foundation Trust to begin work on creating information packs, which will be distributed to schools. There will be a mixture of people there who will all be able to contribute different ideas from different perspectives; a combination of young people with invisible illnesses, their parents, teachers and doctors working together will help us understand how we can best create a resource which will include all of these people to make the everyday lives of a young person easier.

The day will consist of several workshops in which we will discuss the content of the information pack. It will include things such as a plan of action for all involved after a child’s diagnosis, as well as top tips for how everyone involved feels they need to be supported. There will also be discussions of building bridges between parents and teachers and how they are able to efficiently communicate. There will be an opportunity for our young people to be filmed talking about their experiences as well as another section on what methods of distribution will be most useful. Finally, the young people at the day will be given the chance to name and design the official logo of the project. Lunch and refreshments will be provided and Alder Hey have kindly offered to host tours around the new research labs during the afternoon.

I am very excited about everything that is coming up in the next few months and I would love to see as many people as possible on the workshop day at Alder Hey on April 9th. If you, or anyone you know, might like to attend, please let me know or if you have any questions, please do not hesitate to ask. You can email me at: