{"id":19031,"date":"2024-12-13T18:33:35","date_gmt":"2024-12-13T18:33:35","guid":{"rendered":"https:\/\/news.godj.com\/news\/families-seek-cure-for-condition\/"},"modified":"2024-12-13T18:33:36","modified_gmt":"2024-12-13T18:33:36","slug":"families-seek-cure-for-condition","status":"publish","type":"post","link":"https:\/\/news.godj.com\/news\/families-seek-cure-for-condition\/","title":{"rendered":"Families seek cure for condition"},"content":{"rendered":"


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\"GettyGetty Images<\/span><\/div>\n<\/div>\n<\/figure>\n
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People living with perceived misokinesia – a diagnosable hatred of fidgeting – call it “life limiting” and say they’re buoyed by it becoming recognised as a medical condition.<\/p>\n

After the BBC’s earlier reporting<\/a>, many people got in touch to share their own lived experiences, including one woman who said she had “suffered in silence” since childhood.<\/p>\n

Researchers have been looking into the annoyance of little habits some of us can’t stand – like tapping a foot, picking fingernails or smoothing down hair.<\/p>\n

People often report it overlaps with another more recognised condition called misophonia<\/a> – an intense dislike of other people’s noises, such as heavy breathing or loud eating.<\/p>\n<\/div>\n

‘It can be life-limiting at times’<\/h2>\n<\/p>\n
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For Annette Guest, 73 and from Worcester, everyday occurrences like someone jiggling their leg could be enough to prompt a reaction.<\/p>\n

She said her symptoms began at the age of 13, and followed her into adult life including at work.<\/p>\n

“I nearly left a job because someone kept sniffing\u2026thank god they left before me,” she said.<\/p>\n

She described the condition as “life-limiting at times”.<\/p>\n

“When it’s your close family that cause the triggers, and [it] creates the feelings of anxiety and fight or flight response,” she said.<\/p>\n<\/div>\n

‘We desperately want to find a cure’<\/h2>\n<\/p>\n
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\"DawnDawn Page<\/span><\/div>\n<\/div>\n

For Dawn Page, the biggest triggers come from close friends and family<\/figcaption><\/p>\n<\/figure>\n
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Many people who contacted the BBC were buoyed by the fact misokinesia was becoming recognised as a condition, and research was being done to better understand it.<\/p>\n

Dawn Page from Manchester said she “suffered in silence throughout my childhood”, but has only in the past decade been able to talk about it. <\/p>\n

She’s now helping her daughter, who has misokinesia and misophonia.<\/p>\n

“We both struggle on a daily basis, however because my daughter is still at school her stress levels are extremely high and she suffers with migraines which I believe is as a direct result of the stress,” she said.<\/p>\n

Her daughter has recently been given permission to use noise cancelling headphones to help her focus during exams.<\/p>\n

Ms Page also paid for her daughter to get therapy from a leading expert on misophonia, but said it was “ineffective”<\/p>\n

“We desperately want to find a cure,” she added.<\/p>\n<\/div>\n

‘What a load of nonsense, snap out of it’<\/h2>\n<\/p>\n
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\"PeterPeter Holmes<\/span><\/div>\n<\/div>\n

Dr Peter Holmes said his condition started suddenly, like “turning on a tap”<\/figcaption><\/p>\n<\/figure>\n
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But managing the condition can be incredibly difficult, something experienced first-hand by Dr Peter Holmes, 72, from Lancaster.<\/p>\n

He said he developed misophonia during puberty, and then several years later, misokinesia. <\/p>\n

He was triggered by a close family member who would fidget and smooth their hair. That person was also dismissive of his condition, he said.<\/p>\n

He recalled the attitude towards him was, “what a load of nonsense, snap out of it”.<\/p>\n

“I now understand that my conditions were like a reflex or an allergy, my response was hard-wired and no conscious choice was involved,” he told the BBC.<\/p>\n

“These things created a terrible anger in me.”<\/p>\n<\/div>\n

‘I get very frustrated when I see him do these things’<\/h2>\n<\/p>\n
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\"WendyWendy Martin<\/span><\/div>\n<\/div>\n

Wendy Martin’s deafness makes her focus more intensely on body language<\/figcaption><\/p>\n<\/figure>\n
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The challenges of misokinesia can also be amplified by other conditions. <\/p>\n

Wendy Martin, who is 68 and from Oxford, is “profoundly deaf” and uses a hearing aid.<\/p>\n

She told the BBC about her thought process when around her husband.<\/p>\n

“[He] taps his fingers, drives me mad. I get angry at him. Why does he do this?<\/p>\n

“He grabs a corner of the top part of his jumper near his neck. I scream internally.”<\/p>\n

She said her deafness make her focus on body language and facial expressions more so than a hearing person does.<\/p>\n

“I get very frustrated when I see him do these things.”<\/p>\n<\/div>\n

‘They are controlling people around them’<\/h2>\n<\/p>\n
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Among the people that contacted the BBC were loved ones of those with misokinesia.<\/p>\n

Sophie, not her real name, said being around her 32-year-old autistic son who has the condition was akin to “living on eggshells”.<\/p>\n

“I really have to watch what I’m doing with my hands. You have to be very still, you have to be really mindful about the way that I’m speaking.<\/p>\n

“I have suffered. Even being in the room and breathing triggers him. It is life-limiting.”<\/p>\n

She said there needs to be “boundaries” around behavioural adjustments for people with the condition.<\/p>\n

“They are controlling people around them,” she said.<\/p>\n

“I don’t think we can just say it’s because he’s autistic or he’s got misokinesia and we need to just allow for it”.<\/p>\n

She added: “You also have to take a position which is, ‘I have to breathe, you might not like the sound of my breathing but I’d die without it.'”<\/p>\n

Sophie said while research into the condition was a good thing, the focus should be on equipping those who have it with “coping strategies”.<\/p>\n

“Otherwise it’s just going to be anarchy and chaos out there,” she said. <\/p>\n

“Can you imagine being at a restaurant where half the people have all got that condition, it’d really be kicking off wouldn’t it.”<\/p>\n

Additional reporting by Amy Walker<\/i><\/p>\n<\/div>\n<\/div>\n


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Getty Images People living with perceived misokinesia – a diagnosable hatred of fidgeting – call it “life limiting” and say they’re buoyed by it becoming recognised as a medical condition. After the BBC’s earlier reporting, many people got in touch to share their own lived experiences, including one woman who said she had “suffered in […]<\/p>\n","protected":false},"author":1,"featured_media":19032,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[46],"tags":[4233,4034,259,7381],"class_list":["post-19031","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uk","tag-condition","tag-cure","tag-families","tag-seek"],"_links":{"self":[{"href":"https:\/\/news.godj.com\/news\/wp-json\/wp\/v2\/posts\/19031","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/news.godj.com\/news\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/news.godj.com\/news\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/news.godj.com\/news\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/news.godj.com\/news\/wp-json\/wp\/v2\/comments?post=19031"}],"version-history":[{"count":1,"href":"https:\/\/news.godj.com\/news\/wp-json\/wp\/v2\/posts\/19031\/revisions"}],"predecessor-version":[{"id":19033,"href":"https:\/\/news.godj.com\/news\/wp-json\/wp\/v2\/posts\/19031\/revisions\/19033"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/news.godj.com\/news\/wp-json\/wp\/v2\/media\/19032"}],"wp:attachment":[{"href":"https:\/\/news.godj.com\/news\/wp-json\/wp\/v2\/media?parent=19031"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/news.godj.com\/news\/wp-json\/wp\/v2\/categories?post=19031"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/news.godj.com\/news\/wp-json\/wp\/v2\/tags?post=19031"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}