‘I can’t remember what it feels like to not be in pain’

Katie’s brown eyes, outlined by careful eyeliner flicks, look tired yet happy.

We sit across from each other in a crowded college canteen.

Katie (20) is a third-year arts student. She managed to get into university, despite not doing fifth year in school. This was because she had to take a year out as she began developing severe nerve pain on Christmas Eve in 2013. She didn’t think she was going to miss an entire year – she told one of her teachers the day she went home in early 2014 that she would see him on Monday. She didn’t return until sixth year.

Katie has never received a clear diagnosis and doctors have conflicting ideas about her condition. She doesn’t blame them, however, because she knows it is a complicated situation.

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She looks the picture of health, but appearances can be deceiving.

Started in fingers

“The thing about chronic pain is that it’s quite subjective,” Katie says, moving her hands while she talks. Her hands are central to the pain because she has carpal tunnel syndrome. “It wasn’t chronic pain to begin with – it started off as pain in my fingers, then over a month and a half it spread to my hands, my shoulders. Then when it hit my spine – it went full body.”

Katie says some doctors didn’t take her seriously at first because of her age. “They all thought: ‘Ah, she’s young, she doesn’t know what real pain is.’ I always think about the first question they asked me: ‘Did someone break your heart?’ and I was like, ‘No, I’m just in full-body pain,’” she says, half-laughing at the absurdity of the question.

“The doctors finally realised how much pain I was in when I went to a carpal tunnel specialist in Dublin, who did this test. They send bolts of electricity through you to gauge your pain levels. I didn’t even react to the pain, my tolerance was so high at that stage.

“The carpal tunnel went from my hands into my spine and damaged nerves in my back. It’s very rare – I have carpal tunnel syndrome which somehow causes full-body nerve pain,” Katie grimaces.

Chronic pain

“I did go for surgery for carpal tunnel, but it didn’t do much good. They thought they could treat it. They didn’t know I would still have chronic pain nearly three years later.”

Katie’s long and difficult battle with pain has made her far more mature than her years would suggest. She is the youngest of triplets. Rachel and Ciara, her sisters, also went to third level, but to a different college than Katie. “Katie is a very persistent person,” says Ciara. “She’s hardworking,” Rachel adds. “She always tries her best at what she does, which is admirable.”

Ciara and Rachel say that having a sibling with chronic pain is very difficult because you feel powerless to help. “The worst part was she had to spend most of her day in considerable pain and exhaustion, and there wasn’t anything anyone could do to help. It was frustrating seeing different things being taken away from her, like being sociable, walking, talking, even just standing up. It wasn’t fair,” Ciara says.

“It took a while for me to realise how sick Katie was,” Rachel says. “We were both planning to go to the same summer camp that year and, when she realised that she couldn’t go, she got really upset. That made me realise how serious it was and I felt awfully guilty about being able to go.”

Painkillers

Katie was prescribed and encouraged to start taking painkillers in April 2014, so she did. However she stopped that July – she had to be hospitalised due to the pain medication and she refused to take any more after that. Despite taking nothing for her pain, she has a very active life – she was secretary of a college society last year and still goes out with her friends. She also loves going shopping and is passionate about politics – (she bought a pair of shoes online to console herself after Donald Trump won the US presidential election).

“I can’t remember what it feels like to not be in pain. Don’t get me wrong, it has huge limitations – I can’t even write comfortably anymore as my grasp has gone,” Katie says. “I was very positive. Now, I’m not as motivated, like pitying myself, like I can’t do this – why should I even try?” she says.

Katie is thankful for the good days, and gets through the bad days. She is interning in a human rights centre as part of her degree, and works part-time in a shop at the weekends. To do all this while in full-body chronic nerve pain is a huge achievement, but Katie just sees it as getting on with her life as normally as possible.

“You have to be strict and stubborn with yourself and just do it,” Katie says passionately, moving her hair out of her face, gold rings glinting on her forefinger, which was where the pain first started.