Woman's Rare Condition Makes Her Feel Like She's Being Struck By Lightning
A young woman has opened up about her excruciatingly painful condition that makes her feel like she's being 'struck by lightning' every day, after living with the agony for more than six years.
Kate Liberty, 24, from Llantrisant, Wales, first started experiencing joint pain not long after her 18th birthday.
Soon after, doctors diagnosed the teaching assistant and history student with a form of early onset chronic arthritis called axial spondyloarthritis (axial SpA).
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The condition, experienced by one in every 200 people, can affect the spine, joints, tendons and ligaments.
Opening up about the agonising condition, Kate told NeedToKnow.online: “From the moment I wake up, I am in incredible pain.
"Most nights, I can't sleep for more than three hours at a time without having to get up.
“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."
She confessed that, some days, the condition makes it hard for her to even get dressed and ready for the day without assistance.
On her worst days, the 24-year-old struggles to walk, as the arthritis makes it painful to shift her weight.
“It's like a sharp, stabbing 'lightning strike' down my lower back all the way to my calf every day," she shared.
The debilitating nature of the condition means that Kate tends to miss out on activities that friends her age enjoy, which has had further damaging effects on her wellbeing.
She said: “I've never really got to experience nights out in the usual way most young people do.
"I remember after my sixth form prom, everyone went out to celebrate but my body just couldn't cope with it.
"I ended up missing out, which is a massive shame as I didn't feel like I got to say goodbye properly to all of my friends.”
To make matters worse, Kate later developed Crohn's Disease, a condition which can be associated with axial SpA.
Recalling the devastating second diagnosis, she said: "I felt very emotional the day I got diagnosed with Crohn's.
"Sometimes I wondered why this had happened to me and why I had to deal with another lifelong condition."
Kate's luck finally turned when she was offered the medication adalimumab to help relieve some of her symptoms.
While she still struggles daily with her pain, Kate has been working to raise awareness for her invisible condition by taking part in the Walk Your AS Off challenge in May.
Although the drug has already made a difference to her life, Kate still struggles with her health journey, having to deal with judgemental people who don't see the pain she's experiencing.
“Living with an invisible condition, people can't see pain", she explained.
"This is why it is so important to raise awareness of the condition. You definitely get many judgemental looks when you're sitting in a disabled seat on public transport when you look, on the outside, like a 'normal' teenager.
"I tried to avoid disabled seats if I could because I felt like people would think that I wasn't worthy of sitting there.
“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.”
You can learn more about Kate's condition through the Axial Spondyloarthritis International Federation.
Ali Condon