At 15 years old Ruby started experiencing pains which doctors dismissed as ‘growing pains’. However by the end of her GCSEs she was she was virtually bed-bound.
Eventually Ruby was diagnosed with Postural Orthostatic Tachycardia Syndrome as well as Ehlers Danlos syndrome, which affects joints and connective tissue, and can mean chronic pain, fatigue, and frequent dislocations. Ruby’s blog, rubyj0nes.com, has been running for four years, taking people on her journey with her from holidays to hospitalisations and everything in-between.
Ruby’s blog is humane, honest, and doesn’t shy away from the ups and downs that come with chronic pain and mobility issues. She discusses both the mental health impact and the challenge of managing conditions, which can vary from day to day. Ruby’s blog charts both the successes and challenges, in amongst posts on beauty trends, student life, family and friends. On her social media channels she covers topics in an engaging way which works to break down assumptions about what disability ‘looks’ like.
Ruby has written about invisible disability, prompted by someone not believing she was disabled, and works to increase awareness and understanding. Earlier this year she successfully campaigned for her gym to change an ableist quote they had written at the top of the stairs and set up a project called Chronically Cute Cards, which sends handmade cards to other chronically ill people and disabled people.
She says: “Being a young person with an invisible illness brings almost as many issues as the disability itself. I wish I could go back in time to encourage myself to embrace every part of my disability. My EDS isn’t the only aspect of my personality, but it is certainly a part of me, and once I stopped fighting my illness and started accepting it, life became more meaningful and less exhausting.”
Find out more about Ruby here: http://rubyj0nes.blogspot.com/
