Hypermobility - the little-known 'bendy disease' that causes pain and fatigue

Patients in the United Kingdom suffering from hypermobility disorders face diagnostic delays averaging nearly two decades, according to recent research from the University of Edinburgh. Hypermobility Spectrum Disorder (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS) are connective tissue disorders that affect hundreds of thousands of people, yet a lack of standardized medical guidance leaves many patients enduring years of unexplained pain and exhaustion.

The study found that patients wait an average of 19 to 21.7 years to receive a diagnosis for these conditions. Additionally, fewer than one-third of diagnosed individuals reported that their general practitioner initiated management for the condition, and only 13 percent had access to a knowledgeable clinician.

HSD occurs when lax collagen in connective tissue gives joints a greater range of motion than normal. Because muscles must work significantly harder to keep joints stable, patients experience chronic pain, fatigue, and physical clumsiness. Stretchy connective tissue in the digestive system also frequently causes gastrointestinal symptoms. Researchers have further established links between hypermobility disorders and neurodivergent conditions, such as autism and ADHD.

Medical experts state that the diagnostic process is hampered because the National Institute for Health and Care Excellence lacks standalone clinical guidelines for HSD. Dr. Jessica Eccles, a researcher studying brain-body interactions, described access to assessment as a postcode lottery. Dr. Eccles noted that the conditions predominantly affect women, whose health issues are historically under-researched. She added that symptoms can worsen or first appear after physical stressors, including puberty, menopause, or infections such as COVID-19.

Due to the lack of formal medical pathways, many patients rely on self-diagnosis. Vivienne Duval received her diagnosis at age 58 after recognizing her symptoms in a social media video. Duval said she armed herself with information before consulting her doctor, explaining that while she had suffered from separate health issues for years, no clinician had previously connected them to her flexible joints.

Other patients report feeling isolated by the overall lack of public awareness. Luke Grindlay, 23, who was diagnosed in primary school, said the scarcity of available information leads to imposter syndrome and leaves him questioning the validity of his pain. Both Duval and Grindlay noted that the physical toll of the condition has directly impacted their work lives.

Consultant physician and rheumatologist Dr. Stephanie Barrett observed that severe brain fog linked to hypermobility regularly prevents patients from working. While targeted physiotherapy and gentle exercise such as swimming can help strengthen supporting muscles, Dr. Barrett emphasized that telling patients to just do a bit of physio is unhelpful. Experts agree that improving patient outcomes will require government recognition, increased clinical education, and coordinated healthcare strategies.