Self-expression Through ARtS - Long Covid STARS

Blog by Katie Robinson, 18, Writer and Youth Advocate Living with Long Covid

I developed Long Covid in 2020, after my third infection. Almost overnight, I became severely unwell and my health began to spiral uncontrollably downwards.

“The fatigue was crushing, even with minimal exertion, I could not walk more than a few yards, I struggled to climb the stairs and got breathless just dressing myself or standing up. I got scary heart palpitations and developed light and sound sensitivity. I was in denial; I couldn’t believe something like this could happen to someone as healthy and happy as me.”

Artwork by Cerys

Someone who, prior to getting infected with Covid-19, had been involved in every extra-curricular activity on offer, had been a passionate tennis player, had been highly academic and with aspirations of attending an Oxbridge university one day. 

I have always been an avid reader and writer. Reading, thankfully, is something my illness has allowed me (mostly) to continue doing, providing a much-needed refuge, an escape into another world when my own felt too hard and too painful. However, I soon began to become frustrated with the lack of chronically ill characters, particularly in my favourite genre, fantasy. True, most characters in fantasy novels are usually going on long, arduous adventures, or fighting dragons, which makes the author’s task of navigating around a chronic illness slightly more difficult plot-wise. But I was determined to show it could be done. 

So, a couple of years ago, I began writing a fantasy novel, which features a chronically ill main character, specifically with Long Covid / ME/CFS like symptoms. She’s definitely a bit of a self-insert character. Writing passages like ‘Sometime shortly after, the timing all blurred in her illness-addled mind, she began to notice a bone-crushing fatigue that would set in late at night, heavy weights that bedecked her limbs, sand swirling through her veins, and the whirling bouts of dizziness that sent the world spinning on its axis’ was emotional and stirring. 

Writing forced me to reflect and sit with my emotions, no matter how uncomfortable and upsetting. It let me confront my grief and begin to work through it. And of course, my book isn’t all depressing reflections on life with chronic illness - there’s fun things too, to provide a bit of escapism. Masquerade balls, heists, magically floating ships… all the good stuff. 

Fantasy Book image - via thommas68 at pixabay

Contrary to what some of my less understanding peers thought, despite not being in education, I didn’t have more time to work on this novel than them. It was a slow, painful process. Writing and being creative like that takes a lot of energy for me, so I could only do it on days where I felt better, and only in short bursts. But writing that character, who is at once badass and clever and kind, whose illness is only a small part of her, helped me to reconcile with my own illness and loss of identity. 

All of this to say… When I heard about Long Covid STARS, I thought how brilliant of an idea it was, since expressing myself through writing has been so cathartic for me personally. The aim of the project was to utilise arts-based methods to explore the lived experiences of young people with Long Covid, like myself. I’m involved with a lot of advocacy work with Long Covid Kids (LCK), as it makes me feel less helpless in the face of such societal stigma and political disinterest. 

Another uniquely talented creative, Rosie Pidgeon, ran the art workshops, while I ran the writing workshops. Rosie has also used her Long Covid experience to inform her art and express herself, and has had exhibitions showcasing her work, including her current exhibition at the Millenium Court Gallery in collaboration with LCK titled We Are Still Here. 

Together, Rosie and I worked with Dr Marjia Pantelic and Dr Elle Whitcroft from Brighton and Sussex Medical School, who supported us fully throughout the process of developing the workshops, as well as Kirsty Stanley, the safeguarding lead from LCK. We endeavored to make the process itself as nurturing and as creative as possible, and made sure to include lots of accessibility accommodations, such as implementing breaks and recording the workshops, so anyone who wasn't able to attend live could still participate.

In my workshop, I first asked the participants to think of one word that encapsulated their Long Covid experience. It could be a particular symptom, or the way Long Covid has made them feel. It could be positive or negative. To give some examples of words we had: invisible, shattering, fluctuating, forgotten, distant, rainbow, exhausting. I then gave a short masterclass in three key elements of storytelling; character, plot and setting (including a fun quiz about loglines where the participants had to guess the movie based on the one-line synopsis!). Additionally, we aimed to make the workshop as accessible as possible, so participants could create in any format, such as a poem, diary entry, comic strip, a graphic novel, a newspaper report or a screenplay. Here’s an excerpt from my workshop. 

“The workshop will centre around one word that you choose which best describes your Long Covid experience. You will then be asked to create a story about that word (so make it a good one!) I’ll guide you through this and help you create characters and plot, and decide on your genre and medium.”

I felt so inspired hearing everybody else’s ideas. Their fantastic outputs shown at the exhibition are testament to these young people’s talent and perseverance. The pieces of art that we’ve all created together are moving and poignant. I felt so touched when they all reflected towards the end of the workshop and thanked me and my fellow facilitators. Even today, writing this blog post almost two months after the workshop, one of the young people mentioned something I’d spoken about in today’s LCK Connected Zoom sessions, which felt so special! 

The artwork and creative writing was displayed at the Medical Teaching building at BSMS in July 2025. I hope those who have viewed the exhibition feel it humanises children and young people living with Long Covid. It’s easy to feel like you’re just a number on a page or a statistic with this illness. And since creativity is such a personal process, which inherently requires vulnerability and self-expression, I think it’s a perfect way to get across the lived experiences - the denial, the heartbreak, the grief, the pain and the suffering. 

Images of the exhibition featuring some of the participants and Rosie's very proud grandparents.

I find it particularly significant that this exhibition was hopefully seen by many junior doctors and med students. When so many children and young adults feel so misunderstood, trivialised or gaslit by doctors, sharing our experiences with Long Covid has never been so important. To feel that my words and creations of other young people have had an impact in educating the future generation of doctors is powerful. 

Word Cloud generated by feedback from exhibition attendees

Attendees were asked to rate their knowledge and understanding of Long Covid prior to and after seeing the exhibition. Most felt they would now feel confident to challenge anyone who tried to dismiss Long Covid. Below are a few quotes to reflect how the exhibition impacted those who attended.

"Sad, upsetting as very raw, especially around loneliness and not being believed."

"I have a better understanding of the severity of it and the need for more research/understanding."

"I'm inspired by their reselience knowing more about the broad and severe effects."

"I will have much more empathy for anyone having Long Covid. Well done."

Gallery of Long Covid Stars Art and Writing

Elizabeth Jelley

Elizabeth Jelley

Cerys

Cerys

Leith Mcallister

Leith McAllister

BMD

BMD

Jay Jaitly Mcdonald

Jay Jaitly Mcdonald

Rosie Pidgeon 1

Rosie Pidgeon

Rosie Pidgeon 2

Sarah

Sarah

Michael Joelson

Michael Joelson

Lucinda Leal 1

Lucinda Leal 2

Lucinda Leal

Olivia Nero 1

Olivia Nero 2

Olivia Nero 3

Olivia Nero 4

Olivia Nero 5

Olivia Nero 6

Olivia Nero 7

Olivia Nero