Chronic Pain

Making Invisible Illness Visible Through Art

Zara Carpenter's SICK! project aims to unite people with unseen conditions, so they never have to feel isolated and alone.

Not all illnesses are visible. Not all ailments are obvious. SICK! is an arts project set up by UK artist and activist Zara Carpenter, who has fibromyalgia, and contemporary artist Matt Bray. The project runs workshops and curates exhibitions centered around the impact that invisible illness can have in our lives. 

The project has enabled people to express their experience, from the minutiae of living with a non-obvious condition to the emotional distress that can come with it. Demonstrating the importance of art as a vehicle of communication and support, SICK strives to open up the conversation about living with invisible illness and encourage those who suffer from a chronic condition to come out of the shadows.

Folks caught up with Zara Carpenter to find out more about the project. The following interview has been lightly edited for clarity.

Why did you decide to set up SICK?

Zara Carpenter.

My best friend Matt Bray and I were talking a couple of years back. I wanted to do an exhibition of the work I had made about illness and he was curating an exhibition about the body. We realized that we should combine the ideas and do an exhibition about invisible illness. Every time Matt and I met the idea became more solid and something we felt compelled to do. We wanted Rikard’s (Österlund , photographer Zara’s husband) and Xtina’s (Lamb, designer) expertise and ideas so SICK! was born from the four of us, a team effort.

All of us are affected by illness in some way, we have all been through similar experiences (loss, grief, anger, acceptance, defiance) despite having vastly different illnesses. Illness is a leveler; everyone at some point in their lives will be ill or have someone close to them who is ill. It is bizarre that this is the most common thing about people and yet it is something we hide or are ashamed of.

Everyone at some point in their life will be ill… It is bizarre that this is the most common thing about people and yet it is something we are ashamed of.

SICK! sets out to normalize being ill: we need to talk about it to break the stigma. It also allows us to reach out to communicate to people that they are not going through illness alone. 

How have your own experiences of illness and fibromyalgia influenced your artwork?

My artwork has always been a way for me to understand and show visually how illness affects my life. From writing poetry to designing hats, making sculptural assemblages and now hand printing and designing fabrics, creating is a distraction from my pain and also channels my obsessive compulsiveness.

My artistic practice explores the act of creativity as a panacea – shifting my awareness of pain towards something positive.

And how does your creative work help you manage your illness?

It allows me to work through things that are going on in my head that I might be struggling with and it is a distraction from the pain. I have constant pain, but I have managed to be off painkillers for over three years now; I’m not saying it has been an easy thing to do but it was the right decision for me. Now I make things every day. It doesn’t have to be big or important or something that anyone else has to see; as long as I can, I do.

What are the particular challenges of having an invisible illness?

For a large part of my life, I felt alone: on the outside looking in. I was always trying to hide my illness and get on with things and when I couldn’t I would feel guilty or ashamed. Since starting SICK! I have talked to hundreds of people about their experiences and I think that some of the most difficult thing people with invisible illnesses face are:

  1. Not being believed.
  2. Being alone.
  3. Feeling ashamed.
  4. Having no support.
  5. Having to fight for benefits.
  6. Wanting a normal life.
  7. Looking good.
  8. Dealing with the way people talk to you.

We need to be more open about what living with illness is like, so these things do not happen anymore. We also need to educate people on the type of language they use, and clue them in to words that are well-meaning but hurtful.

One important part of SICK is its community – do you think that having a sense of being part of a group of people is important when it comes to managing an illness?

I think it is vital to have a connection to safe people (people you can be you around) and safe places. That’s what is most vital about SICK!: the friendships that have been formed because of it. Being around people who just get what you’re going through is amazing. We have a community of people now who all feel like they can say “I’m not ok today” without judgment and no-one is going to give unsolicited advice or try to make them feel better. That’s powerful.