It’s a bit weird, having invisible disabilities.
I am hypermobile, and my overly bendy joints cause me pain. There’s a certain amount of gate keeping over whether it’s Ehlers-Danlos Syndrome, Joint Hypermobility Syndrome or something else – the boundaries shift over time and depending on who you’re speaking with. I’ve been bendy from birth- endless twisted ankles seen as attention seeking developed into wrist pain aged 14. This blossomed into chronic pain in both arms from finger and thumb tip to elbows (golfer and tennis) over the next few years – thankfully my shoulders seem ok so far. Over the years, I have also accumulated Chronic Regional Pain Syndrome above my left knee, a trapped nerve in my foot and hearing loss in my right ear. My late diagnosed neurodifferences- dyslexia and adhd so far, I’d not be surprised if there’s more- barely made a dent in my personal deficiencies radar.
Because I mostly look fine on the outside, there’s no external proof that I’m not just simply being difficult or making things up. Maybe it really is all in my head? This was especially difficult growing up – I would try to avoid certain activities that I knew would cause me pain, only to be told off and forced to join in with whatever-it-was – and suffer the mostly invisible consequences.
Then there were the medics, physios and occupational therapists. Decades of being told I should just try harder, and things would get easier.
The – redirection – of plans.
I was an archaeologist who couldn’t dig and ended up a bone specialist who literally couldn’t handle the human remains. A mother who struggled to pick up and feed her children and eventually someone who was housebound for a couple of years. An alternative story would be how my husband and I managed to bring up two wonderful, independent and thoughtful children without killing anyone.
It wasn’t until I reached the Pain Clinic at Addenbrookes the second time (a full decade after the first, less successful attempt) that I began to be taken seriously. My consultant encouraged me to get a mobility scooter as I couldn’t walk for any distance without pain. I felt such internalised ableism and stigma around mobility aids, but I’ve long gotten over that. My scooter gives me freedom to get out and about where the car isn’t always suitable, and my mental health would be significantly worse without it. The Pain Clinic physio didn’t push me to do things I knew would hurt, nor did she get annoyed if I’d not managed to do her exercises. Gradually things improved.
Being a life coach is great!
It requires no hands and no legs, just a listening ear, thoughtful replies and gently provocative questions. I learn from some of my neurobox clients – physios and occupational therapists – that thanks to Long Covid, there’s been a real shift in how to manage patient welfare. Previous jolly-hockeysticks enthusiasm is now seen as toxic, and patients are encouraged to rest and manage symptoms rather than being scolded for lack of enthusiasm and moral fibre.
What I’ve learnt is the power of believing someone when they tell you something. Sure, life coaching can be all about challenging client beliefs, but first you need trust and safety. And recognising the damage years of gaslighting can do for people with invisible disabilities.
There is the same gaslighting around neurodifferences. My memory is poor because I’m lazy, my emotional volatility a sign that I’m immature and I lose things constantly because… I’m a fool? Not paying due attention to things?
Being told for decades that you’re wrong- then finding out that you aren’t, you are just different- is empowering. And a good coach will come alongside you, accept you for who and what you are, and work with you to make things better.
About the author
Mary discovered she was neurodiverse after starting work with neurobox in 2023. It didn’t come as a surprise, as she’s had a colourful, patchwork career (highlights include osteoarchaeologist, educator, researcher, textile artist and story teller). Life coaching pulls together her skill set and feels like the missing piece in a jigsaw.
A self-styled Happiness Advocate, she’s worked extensively on happiness: what it is, how to cultivate and enjoy it. She enjoys blogging and posting book reviews on her web page www.LightBlueLifeCoaching.co.uk.
LinkedIn connection https://www.linkedin.com/in/maryibaxter/
Related readings
What’s your Strength – The Neurodiversity Pack has Arrived
