‘I can’t live like this, just take it off.’
Those are the words I screamed through tears, my voice raw, at doctors while in hospital in February 2018.
My left arm no longer felt like part of me; it was a burning, twisted thing attached to my body. I would’ve done anything for the pain to stop.
This ‘pain’ was due to a neurological condition called Complex Regional Pain Syndrome (CRPS).
However, it’s also known by another name – the ‘suicide disease’.
It is no wonder that I thought my life was over when I received my diagnosis at the start of 2018.
However, I didn’t know at the time, but my life would go on to be so full and hopeful, even with a debilitating disease.
Life before my diagnosis could not have been more ordinary. I lived with my parents, loved my role as a teacher, and spent many hours walking my dog, Bessler.
The only problem I had to contend with was seeing my mum face stage 4 non-Hodgkin’s lymphoma. Despite her illness we were determined to carry on as normally as possible.
However everything began to change in autumn 2017, when I started feeling run-down and was diagnosed with a respiratory infection.
I was prescribed a medication for my throat but I had a severe anaphylactic reaction and ended up being admitted to intensive care – where an issue with a cannula led to a further infection.
This was treated with different antibiotics, and surgeries to try and clean my hand from the inside – but it never truly recovered. My hand would swell, change colour and was incredibly painful. I didn’t understand what was going on, and at first, neither did the doctors.
I was just 24, but I felt like my life was over.
The constant pain became uncontrollable. It felt like millions of angry ants were crawling up and down my arm.
A slight breeze was enough to make me scream in agony. The pain soon became the only thing I could think about and my teaching career stalled as a result.
With so little understanding of what was causing my pain. I was being passed between different doctors, wards and teams, without any end in sight.
Eventually, in January 2018, I received the diagnosis of CRPS. Doctors told me that I would likely have years of pain, rehab ahead of me but it was discovering that this condition is dubbed the ‘suicide disease’ that sent me into a spiral.
I’d spend hours in hospital beds and psychiatric units trying to come to terms with what had happened to me.
I was distraught and I couldn’t imagine a future for myself.
The doctors had warned me that amputating could make things worse as the pain might spread.
But on that February night in hospital in 2018, the pain in my arm was so severe, so relentless, I genuinely thought about doing it myself – finding something sharp and ending the nightmare by my own hand.
In that moment I would’ve traded anything, even part of myself, for a release from the pain.
Things got even worse when, in September 2018, I woke up from another operation on my hand, unable to move the lower part of my body.
Doctors were unable to tell if the botched cannula insertion triggered this, but either way, the outcome was the same: I now had to contend with being paralysed.
My life, once defined by movement, independence and purpose, had changed forever.
By 2020, I’d hit rock bottom. Hospital wards had become my home where I trialled multiple different treatments, had endless physio appointments and faced my uncertain future.
One day in March 2024 while on a neuro-rehab unit I sent a silly lighthearted video to my parents of me lipsyncing in my bathroom to an audio of a lady giving a swimming lesson on TikTok.
At the time, it was a decision that felt small and insignificant. At most I hoped it’d give them, and me, a much-needed laugh.
But that video changed the course of my life dramatically.
Having accidentally made the video public, it wasn’t long before the views and comments from people all around the world started rolling in. And to my surprise, most people showed an interest in me and my condition.
I began responding – it left me feeling more connected to the outside world than I had in a long time. The more I shared, the more empowered I felt as my community grew. I realised I wasn’t alone, there were so many more people fighting a similar diagnosis and on similar journeys as me.
While my social media flourished, I was still learning how to survive the reality of my new life as a disabled person. The pain was still constant – but creating content and sharing videos became an unexpected refuge. It was a way to reclaim some sense of control at a time when so much felt out of my hands.
I still can’t believe I now have millions of followers on TikTok and Instagram, but I’m proud to use my platform to show people that, even when life takes a different path, there can still be joy and hope. It’s something I desperately needed when I was coming to terms with my new reality.
That’s why it was such an honour to win Sense’s ‘Digital Voice of the Year’ Award and I plan to keep challenging stereotypes and building a community through my posts.
I know that being diagnosed with a debilitating illness is scary and it’s okay to feel lost or even angry – your whole world has changed, and it takes time to grieve the life you thought you’d have.
But I promise you, this isn’t the end of your story, it’s just a different chapter.
I have found strength as a result of time, adaptation and coping strategies that allow me to coexist with pain rather than be defined by it.
And I’ve had an incredible experience in my wheelchair – like going on rollercoasters, horseriding and water-skiing.
In fact, if I could go back in time, I wouldn’t change a thing.
I love my life exactly the way it is today and that’s something I never thought I’d say.
Do you have a story you’d like to share? Get in touch by emailing [email protected].
Share your views in the comments below.
