Hypermobility, a condition characterized by "bendy" joints, affects an unknown number of people, with many experiencing significant pain and fatigue, often struggling to receive a diagnosis. This lack of recognition can lead to feelings of isolation and self-doubt, as individuals find it difficult to articulate their experiences.
Luke Grindlay, 23, was diagnosed with hypermobility spectrum disorder (HSD) in primary school after teachers noted difficulties with tasks like using pens and cutlery. Despite the diagnosis, Grindlay has not sought formal treatment, citing a form of "imposter syndrome" due to limited information available online about HSD. "If you go online to research this, there's nothing there… I'm going through a lot of pain, but because I can't find anything about it, it's almost like I'm making too much of it," he explained.
The unpredictable nature of HSD means its impact can vary greatly. Grindlay described days where he could run long distances with minimal pain, contrasting with other days where a simple shopping trip could leave him exhausted. Working in golf, his role often involves prolonged periods of standing or waiting on courses, which can be painful. He finds it challenging to communicate the severity of his condition to others due to the lack of public awareness. Grindlay also noted that the effects of HSD seem to be intensifying as he gets older.
Vivienne Duval, another individual affected by the condition, has seen her social life and work impacted. "I used to work as a massage therapist in work places, but I couldn't stand for long and I would get really tired," she stated. She has since transitioned to a less physically demanding role, working as a massage therapist for individuals living with dementia.
While HSD may affect hundreds of thousands of people, particularly in the UK, many face considerable delays in receiving a diagnosis. This delay can hinder access to appropriate support and management strategies, leaving individuals to navigate chronic pain and fatigue with limited understanding and resources.