TYears ago, Candida Doyle spoke publicly for the first time about having lived with arthritis since her teenage years. 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 be ill. Doyle, who plays keyboard with the band, had hidden it so well that when a band member watched the documentary, her arthritis was news to him.
The condition developed when Doyle was 16, a month after her period started (there is believed to be a link between hormones and arthritis, although this is not well understood). “It was suddenly such an extreme difference,” she says when we meet at her home in north London. “I just had pain all over, I lost my appetite. Going up was difficult, and bending and kneeling were difficult. After that I lived with that discomfort for thirty years.”
When she was 17, she was diagnosed with rheumatoid arthritis, an autoimmune disease that affects the joints. She was told the condition would worsen and she might have 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 loved punk, got into the Undertones and started following them to their gigs.
Doyle dropped out of sixth grade. “I think because I was living with discomfort every day and night, and I wasn’t that interested,” she says. “I just wanted to go out with guys, go dancing and see groups.” Almost everyone she knew was in bands – her brother Magnus was in an earlier Pulp line-up as a drummer and when their keyboardist left he introduced Doyle, who had been taking piano lessons since she was seven.
It took another ten years for Pulp to become huge. “When we started taking off, it was really exciting,” says Doyle. They were on Top of the Pops – “The first time was great. I was quite drunk, but we were miming,” – and headlined Glastonbury in 1995. “That was mind-boggling, almost traumatic,” says Doyle. She was quite introverted and liked 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 to the rest of the band – “I never wanted it to make me any different,” she says – and it didn’t have much of an impact on her life. But when she started to lose movement in her arm, she had to keep raising the keyboard “because my arm couldn’t reach down that far.”
At the height of Pulp’s fame, life was brutal. “We worked a lot, toured a lot. We didn’t have many days off. It got to a point where I just got overstressed and had a massive panic attack during the tour. It just became too much.”
In 2002 the band took a break. Doyle, then in his late thirties, went traveling 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’ll continue.” A friend had given her a self-help book – this took a long time to be considered acceptable. Doyle felt ashamed because he needed help. She finally read it when she arrived in New Zealand, when “you couldn’t get further away (from Britain),” she says with a smile.
“I was approaching my 40s and I knew (the arthritis) would get worse if I didn’t pay attention to it. It also started to become visible. Going to a store and getting change, having to turn my hand, that became difficult. I noticed that some things became more difficult.” 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, fingers and wrists do.”
Back in Britain, she was inspired by friends who had become counselors – and received therapy themselves as part of that – and Doyle trained to become one, and did so for the next thirteen years. “I realized that thoughts can affect how you see the world or how you see yourself,” she says. “I discovered denial and I thought, ‘Oh yeah, yeah’.”
When Doyle entered menopause, the discomfort associated with her arthritis virtually disappeared. “I don’t have that constant pain, which is such an incredible relief,” she says.
She still exercises and takes meloxicam, an anti-inflammatory drug. Playing the keyboard helps. “I think if I didn’t do that, my fingers would probably be worse,” she says. Pulp had a number of gigs last year and there will be more to come. It’s “great,” she says, to play together again. Now when Doyle has to play a lot of fast chords, she samples them so she can play them with one note instead of three.
Only in the past decade has Doyle, now 60, been able to talk to friends about her condition. Over the years, she says, she had to work on how she felt about her body. “There is a lot of shame. When I go to put on a jacket, I can’t just throw it on, it can take a while and I still find that embarrassing. I still don’t like doing that in front of people.”
She remembers taking a body image class about fifteen years ago where she had to draw herself. She drew her arms “like two pieces of wood. I felt like my arms were like sticks, they didn’t even feel like part of my body. Looking back on it now, I think that was a terrible way to look at yourself.” Reaching a point of acceptance and even love for her body has helped a lot, she says. “The more I can accept what my body is like, the more enjoyable my life will be.”