I’m in agonizing pain from moment I wake up due to rare illness

A 24-year-old living with a rare chronic illness has detailed the excruciating pain she feels from the moment she wakes up, saying it’s like being “struck by lightning.”

Kate Liberty, from Llantrisant, Wales, began experiencing horrific pain in her joints on her 18th birthday, which led to a shocking diagnosis: early-onset axial spondyloarthritis, a form of chronic arthritis.

Only one in 200 people live with the debilitating condition, which affects the spine, joints, tendons and ligaments.

“Most nights, I can’t sleep for more than three hours at a time without having to get up,” the 24-year-old told NeedToKnow.online.

“My back aches to the point where I’ll have to try sleeping sitting up or if it’s a terrible night, I’ll just get up for 30 minutes to an hour to try and ease the ache.”

Liberty said she finds it hard to get dressed by herself without assistance some days.

“I’m having an awful day, I sometimes can’t walk very far as it’s painful to shift my weight,” she said.

“It’s like a sharp, stabbing ‘lightning strike’ down my lower back all the way to my calf every day,” she added.

Because of her condition, the teaching assistant has missed out on social activities with her friends.

“My body just couldn’t cope with it,” she explained.

Liberty was dealt yet another blow when she was diagnosed with Crohn’s Disease.

“Sometimes I wondered why this had happened to me and why I had to deal with another lifelong condition,” she said, admitting having an “invisible” chronic illness only makes it more difficult at times.

“You definitely get many judgmental looks when you’re sitting in a disabled seat on public transport when you look, on the outside, like a ‘normal’ teenager,” she continued sadly.

However, Liberty’s life changed when she was offered the medication adalimumab to help relieve some of her symptoms, saying it has already made a difference in her life.

Despite her daily pain, Liberty also took part in the Walk Your AS OFF challenge in May to raise money for charity.

“It would be nice to raise awareness for invisible conditions so that people think twice before making someone feel uncomfortable for something that’s entirely out of their control,” she said.