Imagine waking up every day with chronic pain. Imagine masking a chronic health condition under normal clothes. Imagine having an invisible mental or physical illness and being too afraid to speak up about its effects on your day to day life.
A whopping one in three people suffer from an invisible illness. And you can’t tell. Because they’re some of the most normal people you know. They’re also some of the most bad-ass people you know. Creative people. Go-getting people. People who make a difference in their communities. People like Zara Carpenter and Matt Bray, Medway-based artists who are running Sick! – a contemporary arts programme funded by the Arts Council and supported by Medway Council Arts Team running in Rochester and Chatham this summer.
In July, INTRA will play host to a series of workshops, and in August, Sun Pier House will be running a month-long gallery exhibition. I spoke to Zara about her vision for the programme.
“Invisible illnesses are not visible to the naked eye, but are very real conditions that can cause pain, anxiety or tiredness that can be debilitating. In the past I have really struggled with the loneliness, shame and isolation invisible conditions can bring. It’s time for us to shine a light on them, throw paint over them, bring them out from under the covers, shout about them, embrace them as part of who we are, and see just how many of us live with conditions like this. In love, in pain, in laughter, in diversity, in community.
How long has sick been brewing?
“A couple of years really. It’s been in my head for a long time, and a couple of years ago I had a chat with Matt and said what I wanted to do and he thought it was a great idea and thought it should be a group show. We’ve been mulling how to do it for a while and got Arts Council funding which helped us to make it a reality. I came up with the idea because I live with two chronic invisible illnesses, hypermobility and fibromyalgia.”
What are you hoping the workshops achieve?
“They’re not about curing people. It’s about getting people together in a safe place and showing them an outlet for their creativity. Showing them different creative processes. What I’ve realised in the past few months is that when you talk to people, they say ‘I’m not creative’, and what we’re trying to get across is that everyone is creative. If they cook, if they garden, that is creative. And for me, creativity has saved me time after time. It’s how I cope with my illness.”
Tell me more about how it’s saved you.
“I’ve always made things. I didn’t realise until really recently is that the reason I do them is that I am constantly in pain. I’ve been ill my whole life. Trying to work it out, to understand it, in a supposedly ‘normal world’, creativity was my way of coping with it, understanding it. Everything I do – writing, fine art, print works – they’ve all come about from medical experiences. I made a piece called Persephone – a head covered in wild insects, in response to a bleed on my brain where I was hospitalised and nearly died. I did a series of painkiller prints, and they became another focus for me – not ‘it’s four hours until I can take my next painkiller’, but ‘it’s four hours until I can make another beautiful print’. The environment I grew up in – the people around me had such big ideas about what creativity was – not just being A Painter, A Writer – but all these different ways in which you can escape something you’re finding difficult, perhaps, through being creative.”
Tell me about the exhibitors.
“We have twelve exhibitors. We spent a long time approaching people who we know are in some way affected by invisible illness. Either they have an invisible illness themselves or they are carers for people with invisible illness. Danielle Wright is doing a piece about her grandmother’s dementia. She’s doing an animation about it. Rikard Österlund, my partner, is doing a book about my illness from his viewpoint. We’re saying this about the workshops too – people affected by the illness are also those people who are around the person with the illness. It’s husbands, children, and they need to be able to express themselves and talk about their experience too. We’re covering a wide range of illnesses and media – film, animation, sculpture, painting, textiles, print, jewellery… and a corner where we’ll have books and zines – pictorial and written. We want people to feel comfortable to sit and dwell in the exhibition. You need time with this one. You don’t just walk round and see it, you need some time to digest, so we’ve tried to make an environment where you feel comfortable to sit there a while, and absorb everything.”
What events are you running across the programme?
“We’ve got a therapeutic writing workshop on Saturday 8 July, and a zine workshop on Sunday 9 July. On Saturday 22 July, we’ll be making piñatas, including one large piñata, decorated on the outside with motifs to represent the challenges of living with invisible illness and filled with colourful, positive, fun messages of love and hope. The piñata will be on display in the windows of INTRA until it is smashed open in an act of defiance on the opening night of the exhibition at Sun Pier House on 4 August.
“We’ve got a day of talks at Sun Pier house on Sunday 13 August. Kyra de Coninck will be talking on function and dysfunction of fascia and Shell Lawes from Stoma in a Teacup will speak about body confidence and living with an ostomy.”
What are you most excited about in terms of the project?
“I’m really proud of the artists’ work. I’m really proud to show it to people. I really want to see people’s reaction to it, for people to meet and make new friends. I think the opening night is going to be wonderful. We’ll have some spoken word – Poppy Wilson and Rachel Lowrie will be performing, talking about their experiences, and Rachel’s doing a music set too. Everyone is coming together, all the artists…
“I’ve spent a long time apologising for the fact that I’m ill, and I’ve been apologising for people misunderstanding. People with chronic illnesses and longer-term illnesses are perceived as being weak, and what I’ve learned over the years, and it’s taken a long time, by meeting all these other people, is that we’re not weak at all. These people are so smart. They are so strong and vibrant. The struggles that they face every day, but they still create these incredible things – it just blows my mind. I’m almost like a proud mum about all these people that we’ve gathered together. I’m so excited about the opening night, for people to see the work we’ve been putting together, work which has been growing over the past year or so – I think it’s amazing.”
Sick! Runs at INTRA from 8-22 July, and at Sun Pier House from 4-27 August. For more information, go to www.sickblog.co.uk, instagram or facebook. To book spaces at workshops, go to http://sickblog.co.uk/events/The Sick! logo was designed by Ralph Steadman.