In honour of International Chronic Pain Awareness Month I’ve interviewed Ciara Chapman, an artist from Cork whom I learned about through her project My Chronic Pain Diary. The project began as a form of art therapy after she began experiencing chronic pain and has now expanded into more than 100 beautiful illustrations. I had the pleasure of chatting to Ciara about her work and her experiences living with chronic pain.
Congrats on the launch of your book, My Chronic Pain Diary. The art trail you put together around Cork City is such a fun way to celebrate your work. What sparked the idea for the trail?
I applied for the Arts and Disability Connect Network award for the book and exhibition but didn’t get the funding for it, so I felt I needed to expand the project a bit. The art trail started with maybe 8 shops and just got bigger and bigger as more people got involved. It turned into 15 and then we had the billboard campaign to go with it. So it was a kind of small idea that got bigger.
It’s so nice to see how much support you’re getting in Cork city.
It was and I think that businesses would like to get more involved in the arts but they don’t know how to do it so they were really open to any ideas I had, I would ask the shop owner could I use one of your windows for September and they’d say use both or use three windows, and they were just very kind.
That is so lovely to hear! Did the people you approached about this know about chronic pain awareness month?
No, none of them knew about chronic pain but everyone knew someone, their sister or mother or someone who has experienced chronic pain, so they were very interested because of that.
‘Like a child sometimes’ by Ciara Chapman
Your art is innocent and playful but also has a darkness and a vulnerability. Has your perspective or outlook on life changed since your experience with chronic pain began?
Yeah, I think because you get so dependent on people when you have chronic pain. That’s why the girl in my work is quite childlike because that’s how you feel. But at the same time, it is a heavy topic, and sometimes I find that with heavier topics people look away before they even look at your work. So I wanted to engage people in a different kind of way. And I have this idea that if children grow up with the knowledge of chronic pain it’s just accepted by them, then there’s not as much stigma for people like us. You’re not defending yourself all the time. So I definitely wanted to do the kind of work that children could look at and adults could look at, everyone really.
You kindly shared your book with me and one of the things I really appreciate is that there’s no linear or upward narrative from the girl being sick to getting better, because with health issues we’re expected or expecting to ‘get better.’
Definitely, I think TV has portrayed that a lot, even people with the most obscure diagnoses get better, but that’s not real. Even with your loved ones, that’s their expectation They’re wondering, “why aren’t you getting any better?” And I think it’s hard for people to accept that sometimes, you just don’t.
The book shows a mix of the bad and the good, the joyful and the difficult, which is a trajectory that’s hard to accept when struggling with health issues. The girl in the book is often finding happiness in simple things.
I think that when you’re sort of frozen in your body, it’s like you have a better view of your life. You see things you’d just pass by before and you’re grateful for the people in your life in a way you weren’t before. You can just see everything much clearer.
Your work seems like it has the dual purpose of allowing you to express yourself while also giving others an understanding of what it’s like for a sufferer. (I’m thinking specifically of the pieces Which one will I wear today and You can’t help if you won’t see me). We’ve kind of touched on how your relationships with people in your life changed since you began experiencing chronic pain, and how you feel a bit helpless.
Yeah, you feel just like you’re just taking, taking, taking, and never given anything back, and you don’t want to be that person that nobody expects anything of, or, “oh, she’s the sick girl.” Nobody wants to be that person. I think with chronic pain, you need to find little avenues where you can start taking your life back. Your successes become so small. Before, only big things registered. Whereas now, things like doing the washing up and sweeping the floor can really boost you or make you feel like things are going up – and then you have that day where everything goes back down again. So it’s just getting used to the new rhythm in your life.
It can be such a challenge to feel like you’re in control of your life when you have chronic pain.
Oh definitely, I know for me I depended on my husband a lot on my mother so at the start when medical decisions came, I felt I didn’t have enough say in my life, and they should have more because they’re taking care of every aspect of it. I felt like they deserved more of an input than I did. So I would follow things that they would suggest, or if there was a decision that i didn’t want to pursue but they did, I would just defer to them. So it’s hard to accept that this is my life now, and then start to move forward again. What I found really hard was when people would tell me “you just have to get on with it” and I hated that, because I was thinking, “what does that mean?” I’m supposed to accept this? Or do I wait until I get better and resume my life then?”
It’s frustrating, because you know they’re coming from a good place.
It just was coming from everyone, so much information, that you don’t know where your head is at. It’s important to remember that everyone’s bodies are different, what worked for someone else may not work for you. It’s a day by day battle, you need to find an equilibrium. Looking after your mental state, your physical state, and every small thing you do, deciding if it’s worth the pain that comes along with it.
It’s very challenging trying to adapt to a world that is not suited to you. What do you think would be the biggest help or change needed for people experiencing chronic pain?
I was shocked at the amount of people, even doctors, who don’t believe in it. You have to try to remember that they don’t believe in it because they haven’t experienced it. I also thought that your GP project manages your medical life, and they don’t. I didn’t realise I had to go out looking for things and pushing for things. I’ve experienced a pain management doctor that didn’t believe in chronic pain. That floored me. It’s like an electrician that doesn’t believe in electricity!
That’s shocking! There’s a lot of self-reliance involved that I also didn’t expect. You have to rely on yourself to get things done, especially if people are not understanding what you’re going through.
Definitely, you need to listen to what your body is saying, you’re in your body and you know what’s happening more than anyone else.
In my article I’ve listed tips for chronic pain sufferers. I should definitely include art or some sort of creative hobby as a form of therapy. Do you have any advice for sufferers?
Always have some frozen food in the freezer. You always need to have something you can put on, because it can feel like you’re letting yourself down, but you’re not. Another thing a doctor said to me – and it was like a lightbulb went on – you are not your pain. At the start I felt like that’s who I was, a person with pain, and that was it. But it’s just something your body is going through, and that’s nowhere close to the person you are. It’s something you will eventually be able to do easier, but keep reminding yourself of that.
Ciara’s work is being exhibited in Cork Printmakers until the end of the month. Because of COVID restrictions, you’ll have to book a ticket, which you can do here. If you’re in Cork this month you can explore Ciara’s Art Trail, with guided tours of the Art Trail being offered as part of Culture Night. Check out www.mychronicpaindiary.com and www.ciarachapmanillustration.