Jameisha Prescod on demystifying chronic illness

The winner of this year’s Wellcome Photography Prize for her image Untangling gives an insight into her platform, You Look Okay to Me

Creativity enables us to connect with one another. It demystifies our experiences and demonstrates that through sharing them we are never truly alone. Certainly, collective solidarity is at the core of 26-year-old Jameisha Prescod’s endeavours. Prescod, based in south London, is the founder of You Look Okay to Me, an online creative space for people with a chronic illness. There, she debunks the myths around what it means to be chronically ill, as well as the ways that arts and culture influence how the illness can be experienced. The name of the project underscores the presumptions and biases Prescod seeks to challenge; ‘You look okay to me’ is a phrase that Prescod would repeatedly hear when telling people she has an autoimmune disease.

The platform was founded in 2016 and has featured collaborations with Adidas, Creative Conscience, Scope charity, and others. With over 25,000 followers making up Prescod’s online community on Instagram (with further engagement across YouTube, Twitter and Facebook), her knowledge is shared far and wide. She creates comprehensive Instagram reels which give key insights into relevant topics – such as a collaborative approach to medicine, the history of pain, and working from home – in relation to chronic illness. More recently, Prescod has translated her experiences into a photography practice. This year, she won the Wellcome Photography Prize for her image Untangling; a self-portrait in which Prescod sits in her cluttered bedroom, knitting, illuminates the craft as a method for managing a low mood.

BJP talks to Prescod about building an online community of disabled and chronically ill people, and the importance of making the invisible visible.

BJP: Why did you start You Look Okay to Me?

Jameisha Prescod: I started You Look Okay to Me after my lupus diagnosis. I was a new film student and found it really hard to actualise my dreams due to my symptoms and the inaccessible nature of the film industry. The platform became a creative outlet that allowed me to use my video skills in an accessible way for my disability, but also a way to educate people about chronic illnesses. As they say, the rest is history.

BJP: Why is it important to raise awareness of chronic illness through the sharing of lived experience?

Prescod: When I was first diagnosed, the internet helped me understand so much about my disease. I know they say we shouldn’t Google things, but there is often a lack of support about what your ‘new life’ is going to be from the medical end. These resources may help someone who struggles to settle into the new reality of having a long-term condition feel less alone.

Since I communicate best in video form, and have found that I have a knack for breaking things down, I wanted to offer resources that could help someone in the same position as I was post-diagnosis.

BJP: What are the possibilities of disabled and chronically ill people collecting support online?

Prescod: When people from a marginalised community come together to advocate for each other, raise awareness and demand change, it’s a powerful thing. This is difficult to do in person for those of us in the disabled/chronic illness community. The internet is far from a perfect place, but it’s provided us with an opportunity to communicate, support each other and organise to evoke change; not just locally, but globally.

All I can do is try to create change in the language I know best, which is usually creativity. From there, I hope that it can support or create change through my community and then see that change ripple through others.

BJP: Could you explain your image Untangling?

Prescod: Untangling wasn’t meticulously planned, it was spur-of-the-moment. I label it as documentary photography because while it is a self-portrait, it is still a truthful representation of my reality at that time. The mess you see in the photograph accumulated after weeks of depression following a traumatic experience I had at the hospital. One day, I came home and decided to capture [the moment] while doing something that helped me get through my trauma.

The idea of sharing the photo was to make the invisible visible. While working from home, a lot of us strategically angle our laptop cameras to hide the truth of the mess that’s hidden off-screen. There’s a shame in not being orderly; not having yourself together.

I wanted to make it clear that it’s OK if your mental health has deteriorated and your living space isn’t in tip-top shape. We’re all still living in a global pandemic. Right now, more than anything we need to hold a space of compassion and kindness for ourselves and each other.

youlookokaytome.com