CIARA Chapman opens her front door with a cheery smile and an apology. She’s on crutches.
“Sorry, the weather today is making me really bad,” she says. “My leg just switches off and then the pain gets quite intense: it’s the rain and the cold.”
When Ciara woke with the symptoms of sciatica in 2015 at the age of 32, she never could have imagined that she was at the beginning of a three-year journey with a life-altering and painful condition that she still battles today.
She’s in near-constant pain, mostly centred around her lower back and hip. Some days are good, and some days aren’t.
“If it wasn’t for the day being written on this,” Ciara says, picking up a seven-day pill organiser from her table, “sometimes I genuinely wouldn’t know what day it is. Sometimes, your life just feels like a blur.”
Ciara takes pain medication daily, pills and patches, and is also on an anti-depressant, a medication which is frequently prescribed for neck and back pain, but which she says has also helped her with the anxiety she has suffered from in the years since she first went to her GP with the symptoms of sciatica.
Yet for Ciara, there hasn’t been any diagnosis. A total of six consultants — she’s currently under the care of three — have ordered a battery of scans and tests for her, but to no avail.
“They call this a diagnosis of elimination,” she says. “I’ve been told I could have everything from a viral infection to a spinal disc problem.”
Ciara, originally from Co Carlow, married her husband, Corkman Dave, in 2014, and they settled in Turner’s Cross. But a year into their married life together, Ciara’s debilitative health battles began. She now believes a fall she experienced months before the onset of her symptoms may have been the trigger.
“I slipped on the stairs,” she recalls. “It was only a few steps, but the way I grabbed the stairs really wrenched me around. It was uncomfortable for a few days, and then it seemed to get better. I do have a tear in the muscles near my hip that I know about. When it’s soft tissues, scans don’t always work.”
The merry-go-round of medical professionals has been a bewildering and frustrating experience, Ciara says. And in the meantime, her condition has worsened: she’s now confined to the ground floor of her home.
Muscular strain caused by the use of crutches adds to the burden, and her never-ending cycle of medications cause her stomach problems. And there’s no end in sight.
“I was under the impression that your GP would co-ordinate your treatment if you had a medical problem, but that doesn’t seem to be the case anymore. It seems to be that you have to push for things yourself.
“Consultants refer you on and say it’s not their department. I think it’s different if you have something obvious, but if you fall between specialities like I do, you seem to kind of slip through the cracks.”
It’s a healthcare story so different from the experience of many of us. Most people have an expectation that they will attend a doctor, get a diagnosis, and get medical treatment for a defined condition. When these systems fail, or when the answers aren’t there, Ciara, like many chronic pain sufferers, has found that people’s responses can range from unsympathetic to disbelieving.
In Ireland, 13% of people live with some form of chronic pain: more than one in 50 people are living with “moderate to severe” chronic pain, according to a 2006 study. Of these, 42% of people with chronic pain think that others doubt the existence of their pain. It’s common for chronic pain sufferers to be told their condition is psychosomatic.
“I’ve only had one doctor say that,” Ciara says, “but some family members think it, and haven’t been in touch; I think they think I’m pulling a hoax of some sort.
“Some doctors dispute chronic pain, and say it’s psychosomatic. I associate it with all people who are suffering from all different types of pain, and I believe that often it’s conditions that haven’t been discovered yet.”
People without experience of long-term pain often can’t seem to put themselves in Ciara’s shoes, she says, and the result is comments that cause her emotional pain.
A person once told her: “I know you’re in a lot of pain, but you’re going to have to get on with it, you know. I see 85-year-old women in here with constant pain.”
When she’s isolated for long periods of time, Ciara can find herself dwelling on these comments.
“It’s very hard to have your life turned inside out, and have the people who love you not believe you,” she says. “The hurtful things stay with you.”
She tries to stay philosophical about people’s motives, though.
“Everyone has advice about what you should be doing with your body,” she smiles. “Everyone from your family to your taxi driver. Seriously. It’s meant well, but it can be a lot to take in. They’re trying to help. I really need to remind myself that they don’t understand this experience, which is a really good thing, because unfortunately at some stage in their lives they will understand.”
Ciara is a printmaker. She met her husband in Limerick School of Art and Design, where, 16 years ago, she was studying printmaking and he was studying graphic design. In 2016, she began to produce a series of illustrations that express her day-to-day existence, and to put them on a website, www.mychronicpaindiary. com.
With titles like “Time Freeze” and “Help wanted: apply within,” Ciara has documented her physical pain, her isolation, medical interventions, moments of hope, and even moments of envy for those who are obliviously living care-free lives so close by.
In a simple, Manga-like style and a muted palette, her illustrations use a cartoon-like sweetness to portray the harsh reality of living with chronic pain.
“I think I was trying to reach family and friends in the beginning,” she says. “I thought at least if they see how I’m living, it might make more sense to them. And they won’t have to ask me directly, they can just look at it.”
But over time, Ciara’s illustrations have reached a wider audience. Her work has just been exhibited in Cork’s MYO Café, but in the digital realm, she gets lots of feedback too.
“The response is really good,” she says. “Some people have reached out and said they’re really glad they stumbled on the diaries, and that it made a huge difference in how alone they feel.”
Ciara is able to draw and use her laptop lying in comfortable positions, which means that even on days when pain is quite bad, it no longer feel like a lost cause. It’s brought her back to her arts ambitions too; she had been working in admin prior to 2015, but now she’s determined to pursue a career in illustration.
“I’ve never been able to keep a theme in my work before,” she says. “I suppose I’ve never put my heart into something like this before. It’s different if you feel like a part of you is in something. Because of the diaries, I don’t feel like I’ve lost the last couple of years because I put so much into them that every piece is like a little bit of my soul,” she says.
Working towards a future as an illustrator is difficult, though; Ciara and Dave are still hoping that she will eventually get a diagnosis and a definitive medical treatment.
There’s a sense that, for now, living is still suspended as the couple wait for normal life to resume... even, again, when faced with the insensitivities of others.
“People keep saying to us, ‘you have to move on with your life’. But I still don’t really know what that means: you can only take on so much, am I just supposed to go, ‘This is how we live now’? We’re still holding out hope that this will be fixed.”