Rhiannon Davies meets the organisers of Set the SEEN a new community festival for Govanhill that highlights and celebrates invisible illness.

Photos by Alexander Hoyle

“I was cycling to work after a gorgeous holiday in Portugal when a taxi driver mowed me over. I landed on my neck and thought I’d broken it. The pain began to spread and got worse and worse. For four years, I was literally bed-bound.”

Before the accident, Dee Clark was a marathon runner who used to DJ and put on events – a self-confessed party girl who was always out and about, with her finger in a lot of pies. For years she experienced the pain without any awareness of why it was so persistent. It was only when she started to come out in bruising without having any accidents that finally led to a diagnosis of the long term condition, fibromyalgia.

Describing her symptoms, Dee says: “It’s a complete assault on your body. You can’t sleep. Your nervous systems are in constant fight or flight mode. You get anxiety because of that, even when there’s nothing wrong. Then there’s the fatigue. I don't think there’s a word in the English language that’s able to articulate this. It’s like dragging a double decker bus through rush hour. You feel so heavy. And you get this brain fog. I’ve been sat with friends I’ve known for 20 years and not been able to remember their names.”

Dee was inspired to put on a festival after reading Ill Feelings by Alice Hattrick. Described as a genre-bending ‘defiant exploration of life with a medically unexplained illness’, she says the book validated all the things she thought she had been going crazy with. She hopes the festival will be a space to share the collective experiences of those affected, carers and people who want to know more.

In the UK, one in five people suffer from an invisible illness, a number which is set to rise with long Covid. Common invisible illnesses include arthritis, digestive disorders, migraines, lupus, lyme disease, multiple sclerosis, depression and mental illness. Despite so many people experiencing these conditions, there is still very little public understanding and awareness and many feel stigmatised as a result.

Set the Seen festival will be held in the Queen’s Park arena on the 28 May from 10am-10pm. There will be a variety of workshops looking at how to develop healthy coping strategies, create awareness around invisible illnesses, foster a sense of inclusion and develop connections within the local community. They will include creative writing workshops, visual journaling and clay work. There will also be mindfulness and movement sessions and foraging walks to make herbalist healing potions.

As well as a photography exhibition and panel discussions, the festival will close with a concert by the Nevis Ensemble, Scotland’s twenty-piece street orchestra. Through music, it will explore the difficult reality of living with an invisible illness, then delve into overcoming barriers and the struggle and strength to do that.

All public events at Queen’s Park Arena will be live-streamed and there will be an online forum throughout the festival so that everyone who wishes to participate has the chance, even if they are unable to be physically present.

To find out more or get involved, check out Set the SEEN’s Instagram

Issue 6 is now available around the Southside of Glasgow.