Maddie Gordon’s life changed at the age of 11 after a stumble at school. It started a chain of events that led to her being diagnosed with CRPS (Complex Regional Pain Syndrome). Here, she tells feature writer Molly Lee about this little known condition.
Maddie Gordon’s eyes opened. The last thing she remembered was looking at her mock exam paper. She wasn’t sure how much time had passed. She knew something was different. Something was seriously wrong.
She began to pat herself down to check if everything was okay. Working her way down, she began to tap her right leg. Nothing. She prodded again. Still nothing.
“I couldn’t feel my right leg at all,” says Maddie, 20, of Coventry, now sitting in her wheelchair, fittingly orange for Complex Regional Pain Syndrome (CRPS), nearly five years later. “I haven’t actually been able to feel it since that day.”
She asked to be in a separate room for her mocks due to the pain she was experiencing. But that meant she was all alone. Nobody knew she passed out. Nobody was there as she realised her leg had no feeling in it.
This is the story of a decade-long struggle with CRPS that Maddie has endured.
From a young age, Maddie used to dance with her little sister and dreamed of becoming a ballerina. When she was eight, she took the role of carer in her house when her mother began having non-epileptic seizures. In her early years as a teenager, Maddie was in a wheelchair in severe pain.
Her childhood consisted of school, home and pain. “I wished, every year, on my birthday lists for no pain,” she says, knowing that her wishes were futile. “That must have been awful for my parents.”
December 4, 2014, was the day that a simple stumble over a pavement slab at school changed Maddie’s life forever. Only two months into Year 7, she didn’t think this would impact her entire education. She was given a simple bag of ice by first aid. Unsurprisingly, this did not ease Maddie’s severe pains in her right wrist from the fall.
Later, she went to A&E and even they didn’t have the answers about her wrist, which had tripled in size. “I was sent away with the biggest splint you’ve ever seen in your life,” says Maddie, who didn’t get the answers she wanted.
Three days after, she returned to A&E. Despite them not knowing if it was broken, they put a plaster cast on. She wanted the cast to be a colour that people could sign in an attempt to make friends. This didn’t happen. She didn’t have many friends at all.
Maddie’s diagnosis of CRPS wasn’t one of information and understanding. She was simply told that she had this condition, nicknamed the ‘suicide disease’, and had to deal with it. To find out more, her parents googled the condition and couldn’t believe that this was happening to their daughter.
Maddie was unhappy with how her school dealt with the situation as she struggled to learn to cope with the pain. During her GCSE exams, she pushed herself through the pain barrier to the point she was bedbound at the weekends. The grades she achieved did not reflect her true ability – they reflected how hard life was for her during this time.
Determined to continue her education, Maddie applied to a different Sixth Form. But, only a year into her A-Levels, Maddie had a difficult decision to make. Sixth form or her physical health.
Maddie had to leave everything behind to begin intensive physiotherapy at Great Ormond Street Hospital, London. She underwent a timetable of intensive physiotherapy. The goal was to, hopefully, walk again. It didn’t work.
Even now, Maddie has no closure or clarity about her prognosis. “I just want to know whether walking again is doable or not,” she says, thinking about her future. “Because that way I know whether to close that door or not.”
CRPS also has significant mental health implications. “One can only deal with so much,” says Maddie. “I’ve got almost ten years of stuff behind me that I’ve not even had a chance to process because nobody wanted to take me on.”
Maddie faced barriers when she tried to become classified in wheelchair racing and basketball. In an inclusive sport, she was inexplicitly told she wasn’t disabled enough.
Eventually, Maddie found her place. The gym. She soon became inspired by the World’s Strongest Disabled Man and began her weightlifting journey. Since then, she has participated in weightlifting competitions and even outlifted all of the women, achieving first place in one competition.
Currently, she is not letting CRPS define her. She is on the journey to becoming a personal trainer, called The Wheelie PT, which she would love to be her career.
“I just want her [younger Maddie] to know that it’s not her fault,” she says, pausing. “I’m sorry for how I treated her.”
What is CRPS?
- CRPS stands for Complex Regional Pain Syndrome, a term used to describe continuous pain and inflammation that can happen after an injury or medical event.
- Treatment includes physiotherapy, pain relief and psychological support.
- Around 16,000 people in the UK are affected by CRPS (University of Bath study, 2017), although it is a poorly-understood condition.
- Symptoms include:
- Continuous burning or throbbing pain, usually in the leg, arm, hand or leg.
- Swelling.
- Sensitivity to touch.
- Changes to skin colour
- If you need support, contact CRPS UK at admin@crps-uk.org or your GP.
