Lorraine Ansell, a 45-year-old writer, speaker and advocate from Wiltshire, has revealed that TikTok was instrumental in her receiving a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS) after decades of unexplained injuries and pain. She was diagnosed in 2022 at the age of 41, following years of being told her symptoms were 'growing pains'.
Ansell described experiencing a 'lifetime of injuries', including bloody ankles from walking at school, a lollipop stick gouging flesh from her fingers, and a key in an office drawer ripping through her skin. She also suffered from bruising easily, chronic pain, vision loss, teeth issues, and fatigue, but these were treated as separate problems and many tests came back normal.
She told PA Real Life that she 'hadn't realised that everything I had experienced was pain' and that she had been 'gaslighting myself, saying I'm fine'. She had normalised her pain and accepted it as part of her life, until she began seeing TikTok videos from others with 'very similar issues and histories'.
This prompted her to write to her GP and push for a referral, leading to her hEDS diagnosis. The condition is a connective tissue disorder. Ansell has since written a memoir, 'The Surrender Agenda', to help others understand living with chronic pain and how to thrive despite it.
Her story comes ahead of Ehlers-Danlos syndromes (EDS) Awareness Month in May, and she hopes to raise awareness of the condition's varied symptoms.
