Ten years ago, Candida Doyle spoke publicly for the first time about having lived with arthritis since she was a teenager. In a 2014 film about her band, Pulp, Doyle talked about being in denial. It was acceptable for pop stars to have a drug addiction, but not to be ill. Doyle, who plays keyboard for the band, had kept it so well hidden that when a bandmate watched the documentary, her arthritis was news to him.
The condition came on when Doyle was 16, a month after her periods started (there is thought to be a connection between hormones and arthritis, though it isn’t very well understood). “It was suddenly such an extreme difference,” she says, when we meet at her home in north London. “I was just aching all over, I lost my appetite. Going upstairs was difficult, and bending and kneeling was difficult. Then I lived with that discomfort for 30 years.”
When she was 17, she was diagnosed with rheumatoid arthritis, an autoimmune disease that affects the joints. She was told that the condition would progress and that she might need to use a wheelchair by the time she was 30, an idea the teenager did not take well. “It was a dark time,” she says. Music helped – she was into punk, and got into the Undertones and started following them around, going to their gigs.
Doyle dropped out of sixth form. “I think because I was living every day and night with discomfort, and I wasn’t that interested,” she says. “I just wanted to date boys, go dancing and see groups.” Almost everyone she knew was in bands – her brother Magnus was in an earlier Pulp lineup as the drummer and, when their keyboardist left, he suggested Doyle, who had been having piano lessons since she was seven.
It was another 10 years before Pulp became huge. “As we began to rise, it was really, really exciting,” says Doyle. They were on Top of the Pops – “The first time was amazing. I was quite drunk, but we were miming,” – and headlined Glastonbury in 1995. “That was mind-blowing, almost traumatic,” says Doyle. She was quite introverted and happy to be in the background. Jarvis Cocker, the magnetic frontman, got almost all the attention. “Thank God,” says Doyle.
Cocker knew about her arthritis, but she didn’t talk about it with the rest of the band – “I never wanted it to make me different,” she says – and it didn’t affect her life too much. But when she started to lose movement in her arm, she had to keep raising the keyboard “because my arm couldn’t reach down as much”.
At the height of Pulp’s fame, life was relentless. “We worked a lot, we toured a lot. We didn’t have many days off. It came to a point where I just got overstressed and had a huge panic attack on tour. It just got too much.”
In 2002, the band took a break. Doyle, then in her late 30s, went travelling for a year. Sometimes her knees would swell and she would have to stay indoors for several days, wondering if she should come home. “I thought no, I’m going to keep going.” A friend had given her a self-help book – this was long before they were considered acceptable. Doyle felt embarrassed about needing help. She finally read it when she got to New Zealand, when “you couldn’t get any further away [from the UK],” she says with a smile.
“I was approaching 40 and I knew that [the arthritis] would get worse if I didn’t pay it attention. It was becoming visible as well. Going to a shop and getting the change, having to turn my hand, that was getting difficult. I’d noticed some things were getting harder.” Now, she says, “I can’t imagine what it would be like to have straight arms and fingers that can do everything other people’s hands and fingers and wrists do”.
Back in the UK, she was inspired by friends who had become counsellors – and, as part of it, had therapy themselves – and Doyle trained to become one, doing that for the next 13 years. “I realised thoughts can affect how you see the world or how you see yourself,” she says. “I discovered denial and I thought, ‘oh right, yeah’.”
When Doyle hit the menopause, the discomfort associated with her arthritis virtually disappeared. “I don’t have that constant ache, which is such an incredible relief,” she says.
She still does exercises and takes meloxicam, an anti-inflammatory drug. Playing keyboards helps. “I think if I didn’t, my fingers would probably be worse,” she says. Pulp had some gigs last year, and there are more to come. It’s “amazing” she says, to be playing together again. Now if Doyle has to play a lot of fast chords, she samples them so can play them using one note, rather than three.
It has only been in the last decade that Doyle, now 60, has been able to talk to friends about her condition. Over the years, she has had to work, she says, on how she felt about her body. “There’s a lot of shame. When I go to put a coat on, I can’t just throw it over, it can take a bit of time and I still find that embarrassing. I still don’t like to do that in front of people.”
She remembers doing a course on body image about 15 years ago, where she had to draw herself. She drew her arms “like two bits of wood. I felt my arms were like sticks, they didn’t even feel like part of my body. I look back now and think that’s such an awful way to look at yourself.” Getting to a point of acceptance, and even love, of her body has helped a lot, she says. “The more that I can accept how my body is, the more enjoyable my life’s going to be.”
• For more information visit Arthritis Action
