4 years ago, I was diagnosed with Lupus. I know you’re probably wondering, “What’s Lupus?” It’s cool, most people ask the same thing. Lupus is a chronic disease where my immune system doesn’t work properly. Instead of fighting off diseases, viruses, bacteria and other bad stuff, it attacks my own body instead. This causes joint pain, muscle aches, fatigue and a range of other symptoms. You wouldn’t know any of this from looking at me. On the outside, I seem fine, but on the inside, I’m very sick.
I started university at the same time I was diagnosed with Lupus and quickly realised the impact this would have on my life. I originally started university with the aim of being a cinematographer. Doing this would mean 16 hour days with lots of physical activity which wasn’t possible with my health issues.
I quickly grew frustrated that I wasn’t going to be able to live out my full potential like the rest of my peers. This led me to come up with You Look Okay To Me, the online platform for pain and chronic illness. Here I was able to express myself creatively by making short videos, podcast episodes, blog posts and other creative content about chronic illness. This also allowed me to explore healthcare in general and how it connects to wider themes like technology, art and culture.
After creating the platform, I started to have other conversations with young people going through similar issues. It made me realise there is a space to use my creative skills to make a social impact. An impact where we see changes in the way employers make adjustments for people with health issues. Where schools provide more support for students with chronic illnesses. Where people are are generally more understanding. I hope to do this by providing a community for chronic illness patients to be open and honest as well as educating wider society.
It’s not always easy to use your creative skills for social change while dealing with health issues. Sometimes I wonder if the work I do is actually reaching people. But from the responses I have been getting so far, I think I am, and I hope I continue to do so.