How I “Became” Disabled.

Hi there! Thanks for stopping by.

Today I’m sharing the story of how I ended up with my own freelance writing business and YouTube channel focussed on life with a disability. Grab a beverage and get comfy as I share my journey from seemingly able-bodied (but gigantic!) baby, to disabled activist and writer…

An unusual child.

Technically I was born with my condition, but we would have no idea until years later. To be honest, I was a rather unusual baby. I was massive for one thing, which would translate into above average height as I got older, and I also had strabismus and undeveloped hips, meaning I had to wear a harness and be prevented from walking for a few years until they healed. An interesting start.  

As I started school, it became apparent that I was functionally useless at mathematics. I know, a lot of us think this about ourselves, but I was on another level! Nothing number-related would stick in my brain, it seemed as though it was allergic to numbers! Years later, I would be diagnosed with dyscalculia, a numeracy learning disability, and suddenly those years of academic struggle seemed to (forgive me) add up.

Alongside my numeracy woes, I had started to experience frequent palpitations and a perplexing tendency to get out of breath and dizzy when standing up too fast or walking up a flight of stairs, despite the fact that I was fit and active. By age sixteen I was noticing stretch marks in unusual places. As you might imagine, these things were not exactly a recipe for high self-esteem!

I know what you’re thinking. These things all sound completely irrelevant, don’t they? Well, the centre pieces of the puzzle are often an unrelated mess until you’ve got all the corner bits in place. 

The Diagnosis.

It turned out that these apparently irrelevant issues were related to one rare condition called Ehlers Danlos Syndrome. How did we find this out? Well, my sister was diagnosed first…by a podiatrist. Yes, it really is that far-reaching!

EDS is a connective tissue disorder characterised by joint hypermobility, faulty connective tissue and musculoskeletal problems. It only becomes apparent during puberty, which explained the slow increase in symptoms I was experiencing.

Until my early twenties and my admission to university, my symptoms were pretty manageable. I wouldn’t have considered myself disabled and happily enrolled on a full-time course to study English for my Bachelor’s degree. It was towards the end of my first year that things started to change, and fast. 

So, how did I “become” disabled? When did I start to consider myself such? Everyone’s journey is different, but for me it was when I realised that my health was impacting my daily life. Suddenly, getting the bus into university and the walking and standing around between classes was becoming a struggle. Chronic fatigue, which I had in hindsight struggled with since my teen years, meant that early classes were impossible for me to attend. I started to opt for squeezing into the lift to get up to the second-floor classrooms because walking tired me out. I worried about being able to stand in line if there was a queue for the bus.

I remember a trip to the doctor when I was suffering with ankle pain after wearing my beloved stompy new Doc Martens and being asked if I had walked on uneven ground lately. Uneven ground? Is this what things were coming to? As you can imagine, mine wasn’t exactly your stereotypical, wild student experience!

Accepting my disability.

It wasn’t long before I caved and arranged a meeting with my university’s student support team to disclose my condition and ask for adjustments. The team was pretty helpful in some areas (not so much in others!) and as I finished my final year of university I had begun to accept the fact that I was now disabled. My daily life and my condition were now inextricably linked. I was already a “mature student” at 22 years old, but becoming part of the miniscule disabled student demographic felt a little isolating. I managed to finish my degree as a full-time student just before my condition began to progress, with a myriad of hospital appointments to arrange and attend, changing my daily life forever. 

Five years after graduating, I now run a YouTube channel and Instagram dedicated to sharing my personal experiences of living with a disability and chronic illness. Accepting my disability was a long and sometimes painful journey, but I am now comfortable with being disabled and proud of myself for hanging on during such a rollercoaster ride. Sharing my experiences through my writing is my next adventure. My goal is to show that your life doesn’t have to grind to a halt due to disability, and break down the stigma that so often associates itself with the disabled experience. I hope that this brief look into my story is illuminating and affirming to those with similar experiences. 

If you would like to hear more about my experience with disability, please check out my YouTube channel, and if you would like to work with me, feel free to get in touch