Living life with Joint Hypermobility Syndrome
Although born with the condition, I wasn’t formally diagnosed until 2013 when I was 27 and attending university as a mature student, a time in my life that was...well, to put it lightly...tumultuous, stressful, and wrought with negative emotion that flared up my joint point something rotten. I’d put off taking painkillers for a good chunk o’time (and by that I mean pretty much all 27 years of my life), but eventually decided enough was enough when the cold winter weather settled on into my body and I couldn’t think let alone bloody write essays or study for exams, and so arranged an appointment with a new-to-me-Doctor who’d go on to be the first ever to take my pain seriously.
To cut a long-winded story a little shorter, I was eventually sent to a rheumatologist (by way of lots of tears and a meeting with a physiotherapist who was, shall we say, less than keen to believe I had ‘the syndrome’, more than keen to say ‘yup, you’re just a bit flexible’) who bish-bash-boshed me through The Beighton Scoring System, giving me a (best test score I’ve ever received) full 9 out of 9, and turned me on my “thank cripes for him” way with the promise of a letter stating “Yes, you have Joint Hypermobility Syndrome” (or, you know, something medical terminology-y).
From there on out I’ve been learning to live life with chronic pain and BOY has it been quite the ride. Coupled with a job or two that knocked the wind out of my sails emotionally, mentally, AND physically (the trifecta of metaphorical blows to the knees), and a personality that lends itself to attaching one’s self worth to what one does (that’s a whole ‘nother story in its own right!), I’ve been living a vicious cycle of pain fed by emotions, emotions fed by unhappy work life, unhappy work life fed by pain...and so on and so right ruddy forth (unhappy work life removed by my game-changer decision to take life into my own hands and start up Candid Films…)
One of the things I have found to be helpful in managing life with an illness is being candid (I know, I know...sensing a theme with the ‘c’ word there, aren’t you?!) about my journey online. Ever a warts-and-all storyteller who likes to cut out the bullcrap and tell it like it is (I come with my own *weeping human warning*), I’ve recognised that, in telling my own story, others observe in it moments/worries/chapters of their own and feel a certain sense of empathy, or less alone-ness that has lead to relationship building, and community moulding, because nowt better in life that connecting to another human on a heart-to-heart, “I hear and I see you” level!
If you ever want to know more, or if you’re struggling with chronic pain, or a chronic illness, and would like a listening ear, please do feel free to email me: you might feel lonely in your struggles, but you are never alone.