#CelebratingEngagement: In conversation with Louisa Thompson and Linda van Keimpema

Linda van Keimpema is a Digital Transition Fellow at the Faculty of Medicine at Imperial College London. In 2022, she nominated Louisa Thompson for the Inspirational Partner Award as part of the President's Awards for Excellence in Societal Engagement. The award recognises exceptional people who collaborate with the College from outside our Imperial community to make engagement happen.

Linda and Louisa worked closely together to develop Invisible Warrior, an innovative project which aims to raise awareness and develop a deep understanding of sickle cell disease, the invisible disability Louisa lives with. 

We caught up with Linda and Louisa to discuss Invisible Warrior, why engagement is important, and the value of nominating external partners for a President’s Award.

How would you describe the Invisible Warrior project?

Louisa: Invisible Warrior is a project that was born because, during lockdown, I was asked by my therapist to speak to medical students about the effects of having sickle cell disease. They talk not just about the physical effects, but the psychological effects because that often gets overlooked. Patients are mainly only helped with pain and medical support, but what's also very important is the mental effects because stress, moods, depression, and anxiety are all a huge trigger for sickle cell warriors. So I decided to write my life story of having an invisible disability and how it affects me day-to-day. It includes all the milestones in my life as well as the hospital admissions.

For me, it felt like therapy to speak my real truth and I guess my transparency impacted Linda as she told me my story needed to be heard. I agreed to partner with her, and so Invisible Warrior was born.

Why do you think engagement is important and what do you think are the benefits of this?

Louisa: It's important to spread awareness and to educate. For me, it’s about sickle cell disease as that's what I suffer with – that it's an invisible disability and that it can affect your mental health. We incorporated the science, the sickle cell disease, the genetic blood disorder, the history of the disease, my life story and developed an interactive session which is Invisible Warrior. It teaches that what a person looks like on the outside versus what's going on in the inside isn’t always the same – they could have a disability or mental health challenges at home, school or elsewhere.

I think engagement is really important as spreading awareness and sharing your experiences may help at least one person or change their perspective. Being open about your experiences can be scary, but the positive response always outweighs the fear. Informing people that may have limited knowledge is so important as this helps people to have a better understanding and can potentially help to improve care on many levels.

Sickle cell disease is unfortunately a disease that doesn't get enough exposure, help, and support. By advocating for sickle cell disease we are encouraging a better understanding of the disease and hopefully we can help to get more support, empathy and overall better treatment.

What advice would you give to people at Imperial who want to engage more with their audiences?

The path will be open for you to create a great project from the heart

Louisa: Just do it. No matter how hard it may seem. Start the process, start somewhere. The path will be open for you to create a great project from the heart and help to engage with and support others. If you teach one, the ball starts rolling and the chain reaction will help many.

Has the award inspired you to do anything more in engagement? What are your next steps after winning the award?

Louisa: It has inspired me in so many ways – not really realising what I have gone through in my life, living with sickle cell disease. I realised that I'm strong even when I feel like I'm not and that I do my best knowing I'm helping other warriors and even other people with invisible disabilities. I want people to have empathy and a better understanding of invisible disabilities.

It makes me happy and excited that I can inspire future medical students and professionals, future scientists, researchers, nurses. Hopefully I can make a change to the stereotype of sickle cell patients, and I hope that I can continue, Invisible Warrior grows, and I don't feel ashamed anymore of having sickle cell disease. Each session I do encourages me to keep on fighting for my health. My mental health. I feel very blessed to be able to do this. I'm not a victim, I'm a survivor.

Why did you nominate Louisa for the President's award in societal engagement?

Linda: I think what Louisa has done is just above and beyond what anyone could ask of her, and I think that's what the President’s Awards should be about – that people do something special and go further than whatever is written in their job description. Louisa from day one has done so much work for this project which is unbelievable considering she is living with a chronic illness and invisible disability. I mean, it's not an easy project.

It's been such an honour to support her in this journey, and I learn so much every time Louisa stands up and tells her story again and again. Although she's been through trauma, she can talk about her story so clearly and bravely, it's just so inspiring.

I only learned about the President’s Awards when a colleague talked about nominating someone else for teaching, and then I went to the website because I also wanted to nominate a colleague. It was only then that I found about the Inspirational Partner Award, which is exactly what Louisa is. I think it's written on her forehead. There was no way I wasn’t going to nominate her and I'm so grateful she won.

Why do you think it's important for people like Louisa to be recognised for their work in societal engagement?

Linda: I think it adds so much to a story to work with an external partner. For us, our project started with Louisa and her life story, and everything we do could not be as great as it is without her. Louisa lives with this disease and therefore she knows what to bring and what to focus on.

It's really her project and she doesn't even work for Imperial, so I think that adds even more. She’s really gone above and beyond what we ever asked of her.

What advice do you have for people who want to nominate their colleagues or external partners?

Linda: Just follow the process. It's actually straight forward, you just need someone to validate it.

It's quite nice to nominate someone because you have to dig into all the evidence you have, but that only takes maybe one or two hours. It's not a difficult process, it's straight forward. Just make sure you do it on time because you can add attachments so save some time for that!

Are you interested in nominating a colleague, student or an inspirational partner who has gone above and beyond to support the development of societal engagement at Imperial? Please read our guidance and submit your nomination!