- Beth Rose
- bbc access all
Livvi stands between two masked men involved in a kidnapping gang.
Investigative journalist Livie Haydock, known for making documentaries about some of the world’s most notorious criminals, was shocked near home when she was diagnosed with multiple sclerosis (MS). But she found support from the most unlikely people: the criminals she interviewed.
“I’ve always been told I’m not scared of anything, but this MS scares me,” admits Livvy. “I feel so small.”
The 38-year-old lives an edgy life, producing and screening documentaries on topics from Congolese girl gangs to child soldiers. Her latest hit is BBC Sounds’ Gangster: The Story of John Palmer, which explores John Palmer’s involvement in the 1983 Brinksmutt gold bullion robbery, the largest armed robbery in British history.
Her love of American rap music as a teenager shaped her fascination with underworld criminals, gangs and violence.
“I wanted to understand that,” she says. “A lot of the time people who commit crimes are unable to talk about it from their point of view.”
It helped me understand what motivates me to take such risks, and how sometimes the choice seems “logical.”
When Livvy was investigating the anti-drug war in the Philippines in 2016, the plot of her own life began to unfold.
“I had a real problem with my leg,” she told BBC Access All. “It was definitely dangerous food.”
Livvy completed the film and returned to the UK, but her symptoms persisted. During her next four years, she went to the doctor several times, but she never received a diagnosis. In 2020, she was offered a spinal tap (spinal fluid test) to “rule out multiple sclerosis.” However, the results were confirmed to be the exact opposite.
Multiple sclerosis occurs when myelin, the protective layer that surrounds nerve fibers, is damaged, stopping the flow of messages between the brain and the body. It can affect the spinal cord and affect vision, movement and balance.
After a call from a neurologist confirming that Livvy had multiple sclerosis, she was told she would receive another call within a week to develop a treatment plan. But weeks went by, and while she was trying to put it together, there were no calls.
She distracted herself by focusing on a documentary she was working on about kidnapping gangs.
But by Christmas, “a grenade exploded” and a small family disagreement turned into “something from EastEnders.”
Claire, a wheelchair user, revealed she had waited more than three years for her public housing to be adapted, even though the city council approved the work in 2019.
When I finally got a call from a nurse and Livvy started processing the diagnosis, I knew I had to think very carefully about my future, especially when it came to the risky investigation.
She can no longer count the number of freezing nights outside waiting for dealers to show up for interviews. often say to latecomers because of the pain they caused her.
But her job was also her salvation – not just as something she could lose herself in, but as an unlikely source of support and empathy.
“I run into a lot of obstacles in the criminal world,” she says. “At some point, most of the gang members I interviewed were in wheelchairs or had health problems from gunshot wounds.”
Sickle cell disease is one of the disorders she frequently encounters. Red blood cells become distorted and sticky, blocking blood vessels and limiting oxygen supply, causing excruciating pain.
One of her contacts was being treated in hospital when she became a honey trap victim. A rival gang sent him an Instagram message, pretending to be a woman and saying how “hot” he was.
“He was in the hospital and said, ‘Come see me,’ so a rival gang went to visit him in the hospital and attacked him. It was outrageous,” she said.
Another of her favorite contacts to talk about living with a disability is a US-based converted gang member. At the height of her notoriety, she ran her 30 drug houses in Dallas. Then his gang turned on him.
“They shot him in the head. The bullet hit both his optic nerves and killed him. He managed to get up and is now completely blind,” she says.
Some of the criminals Livvy speaks to are also caregivers for friends and family members with disabilities.
“So many young people are in the care of their parents. she says.
Livvy’s multiple sclerosis affects her legs and eyesight and causes severe pain in her side, similar to the well-known multiple sclerosis symptom “electric shock.”
She also sometimes has trouble finding the right words.
Her treatment includes injections every six weeks to help reduce damage to the myelin sheath and the amount of scarring.
The condition also caused other problems she didn’t expect to face, such as whether to tell future partners about her multiple sclerosis.
“Trying to date is hard enough,” she says.
As a freelancer, she now has to rethink her life plan and career, and must ensure that she manages her money, health, and safety in an unusual job.
“This industry is hard and it’s always scary to take time off,” she says. “I can’t turn down a job just because I’m afraid I won’t be asked to do it again.”
But even if her career takes a different turn, she intends to continue confiding in contacts who understand what she’s going through.
“A gentleman I know spent so much time in prison that he actually fell off a bunk bed and injured his back badly.
“It’s very funny. It goes from robbery to ‘How’s your health?'”
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