For eight years, Mike Bell believed he had Parkinson’s disease. He attended the World Parkinson Congress in Spain, wrote a poem a day, fundraised with sponsored walks and a parachute jump, and built a new sense of purpose around the condition. Then, at 61, a new consultant reviewed his case, arranged brain scans in “every possible position”, and told him he did not have Parkinson’s after all. In that moment, Bell says, he “lost his roadmap” – and with it the community of people living with the same illness and the campaigning work that had come to define his life.
‘I felt like an impostor’
Bell’s three adult children were relieved at the news last June. But his own reaction was immediate and disorienting. “I felt like an impostor,” he says. His campaigning, he worried, now seemed fraudulent. The poetry stopped. The illness that had been “driving me to do things and to engage” was gone, and he was left with unexplained pains, tingling, tremors and skin problems – symptoms that had not worsened even after he stopped taking his prescribed medication. His medical team have suggested alternative diagnoses such as fibromyalgia or chronic fatigue syndrome (ME/CFS), but he still does not know for certain what is wrong with him.
For Bell, the loss of a diagnosis meant the loss of an identity. “It’s been a year getting my head around the de-diagnosis,” he says now. “I’m still dealing with it, adjusting.”
From diagnosis to community
Bell was 53 and working as a freelance show designer for corporate clients when he was first told he had Parkinson’s. He had been working long hours, seven days a week, from his shed. “All those things we worry about now with working from home were hitting me. The loneliness,” he recalls. Sitting in the doctor’s office, he felt relief. “I thought: OK, it’s got a name. Therefore, I can take drugs. Therefore, we can control it.”
He developed what he calls his “Parkinson’s filter” – a set of activities that kept him healthy. He embraced creative projects, writing a poem a day and calculating that by the time he had written his 10,000th verse, he would be in his 80s. He wrote a children’s novel and meticulously researched musicians’ careers, plotting them – complete with release dates and session musicians – in the style of a London Underground tube map. He joined a community of people with Parkinson’s, attended the World Parkinson Congress, advocated for better understanding of the condition, and fundraised with sponsored walks and a parachute jump. His second marriage ended and freelance work became scarcer, but he focused on keeping going.
The Parkinson’s community gave him a sense of belonging he had not anticipated. According to Parkinson’s UK, a survey found that 26% of people living with the disease were initially misdiagnosed with a different condition. Of those, nearly half received treatment for the incorrect condition, with 36% given medication and 6% undergoing unnecessary surgery or procedures. Diagnosis remains challenging: there is no definitive test, and the condition has more than 40 symptoms that can overlap with other disorders. Research suggests misdiagnosis may be more common in people aged 51 to 60, and that women may be more likely to be misdiagnosed than men.
Rebuilding identity after the diagnosis vanishes
The psychological impact of losing a diagnosis can be as profound as receiving one. For Bell, the Parkinson’s label had provided a structure – “a roadmap” – and a community that understood his daily reality. Without it, he felt adrift. “I lost the thing that was driving me to do things and to engage,” he says. He re-examined his life, tracing his sense of being an “impostor” back to his childhood. The third of four boys, with a father who was a police officer and a mother who was a nurse, he grew up feeling like an “accident”. That feeling, he now thinks, was not far from the impostor syndrome that struck him after the de-diagnosis. “I always worked long hours to prove my worth. It’s like: I’m here. This is me.”
His early career had already taught him to navigate uncertainty. He left school at 18 after “cocking up my A-levels” and went to work for a music staging company at the film studios in Shepperton, Surrey. One day David Bowie wandered across the loading dock. He had a brief stint as a roadie with Simple Minds, working his way home from France. In his 20s he began working in corporate production – installations for live events and conferences – and eventually designed them himself. “I loved organising things, managing the resources, getting things happening … scheduling, spreadsheets, worrying about this, worrying about that,” he says. “In a sense, I always liked roadmaps.”
His doctor has suggested that fibromyalgia or chronic fatigue syndrome (ME/CFS) could explain his ongoing symptoms. Fibromyalgia affects around 2.5 million people in the UK and is characterised by widespread pain, fatigue, sleep disturbances, and cognitive difficulties sometimes called “fibro-fog”. Diagnosis is difficult because there is no specific test, and symptoms vary. ME/CFS, whose cause remains unknown, is defined by extreme fatigue that does not improve with rest, sleep problems, brain fog, and post-exertional malaise – a worsening of symptoms after physical or mental activity. Both conditions can leave patients feeling isolated and struggling to find a clear medical narrative.
Forging a new path, with tube maps and band merch
A year on from the de-diagnosis, alongside the relief, Bell has experienced what he calls an “accidental reset”. He has made lifestyle changes: drinking less, eating better, fasting from 5.30pm. He has met someone new and fallen in love. And he is thinking about a new career. “At 62, I can start a new career. I can do band merch,” he says.
His distinctive tube-map designs – which he originally created as a creative project – have found a new life in the music industry. This year he has supplied his foldout maps to country singers Dierks Bentley, Lainey Wilson and Cody Johnson to sell as tour merchandise. Band merchandise has become a significant revenue stream for musicians, with design playing a crucial role in sales. For Bell, the work takes him back to his roots. “The band maps take me all the way back to the beginning again, when I could pack a truck with flight cases all the way to the hilt,” he says. “It was an art.”
But now it is the data and the research that excite him – tracking the intersections of artists’ careers, plotting how all the connections fit together. In doing so, he is becoming his own mapmaker, finding a place for himself. “You can re-enter rock’n’roll,” he tells himself. “It’s like living a new life.”