I’m 28, have a life-limiting condition, and have been in 6 comas – but I couldn’t be more proud of my body

It was only when I started passing out regularly at school aged 14, that I was eventually diagnosed with Postural Orthostatic Tachycardia Syndrome (Picture: Ruth Spurr)

Opening the email, I stopped, stared – and screamed. 

‘Mum!’ I yelled, wheeling into the kitchen. ‘Does this really say I’ve been shortlisted for The Diversity Awards?’ 

She jumped to her feet and read it over my shoulder. ‘Yes!’ she whooped. We both squealed in delight, then burst out laughing. 

I was stunned and completely overwhelmed. It showed I was making a difference by helping other people. Having an impact on the world.

And to someone aged 28 with a life-limiting condition, it meant so much to me. 

Growing up, my health was never wonderful. I was hypermobile and suffered from IBS, urinary tract infections and unexplained aches and pains that were put down to growing pains. 

It was only when I started passing out regularly at school aged 14, that I was eventually diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS. It’s when your heart rate increases on changing position, like sitting to standing, and makes you likely to faint. 

Since it’s usually caused by other medical conditions, doctors did various tests and eventually, in December 2015, aged 20, I was diagnosed with Ehlers-Danlos Syndrome (EDS). 

I’ve spent the past eight years in and out of hospitals (Picture: Ruth Spurr)

EDS is a complicated condition that affects the connective tissues in my body, which can affect people’s joints. I get a lot of pain. But in my case, it has also affected my internal organs, including my bladder and bowel. 

I also have Addison’s Disease, which doctors don’t know is connected to my EDS or whether I’m simply that unlucky. That has given me osteoporosis, which affects my mobility and means I am on steroids permanently, which suppresses my immune system.   

Simple infections like coughs and colds can spread easily and become extremely serious. 

While none of my conditions are terminal, they can be life-threatening. 

I’ve spent the past eight years in and out of hospitals, been in comas, undergone numerous operations and had respiratory and cardiac arrests – any of which could have proved fatal.  

Even when I wasn’t in hospital, it was hard to come to terms with the way my life had changed completely. 

I grew to recognise my tubes weren’t unsightly, they were what was keeping me alive

While my friends were getting boyfriends, traveling, or starting out on their careers, I became a full-time wheelchair user. I had various tubes inserted into me to help feed me, drain my stomach, and go to the toilet. I’ve also had a central line on my chest fitted to help administer medication and fluids.

When I looked in the mirror, I couldn’t see anything more than a piece of medical equipment. 

I’d planned to spend my career helping others – I’d volunteered at Great Ormond Street Hospital before my diagnosis, then managed to secure a job as a support worker for young adults with brain injuries. 

Soon, I was too ill to work.

It felt like it barely mattered whether I was here or not, and I ended up in a really dark place. 

My wheelchair wasn’t just something that made me stick out like a sore thumb, it was my way of getting around (Picture: Ruth Spurr)

It was only the following year, when I received my assistance and medical alert dog, Willow, that I finally saw some light. After all, who can stay sad when there’s a beautiful puppy lying close to you, wanting her tummy to be tickled?

She gave me the confidence – and the reason – to leave my house, and get back out into the real world. 

Since my diagnosis, I have been in six comas and although they showed just how serious my condition was, when I woke up from them, I felt increasingly grateful to be alive, to be with my family. I remember a nurse coming in and looking confused when she found us all laughing. 

‘You’re still really ill,’ she told me. But at that moment, it didn’t matter.

It gave me a new respect for my body and for everything it was doing to survive against the odds. Soon, I grew to recognise my tubes weren’t unsightly, they were what was keeping me alive. 

My wheelchair wasn’t just something that made me stick out like a sore thumb, it was my way of getting around, my independence. 

People started messaging me, thanking me for being so honest(Picture: Ruth Spurr)

I felt so inspired, I took to Instagram and TikTok to tell people about my condition and my life. I wanted to show everyone that it wasn’t only elderly people who were disabled. That people of all ages could be – even people like me, in their twenties.

I posted pictures of myself with Willow and in swimsuits, videos of the reality of the highs and the lows of my life, showcasing the body that I was suddenly incredibly proud of. 

‘Every day may not be good, but there is something good in every day,’ I signed off all of my posts. 

The response was phenomenal. 

People started messaging me, thanking me for being so honest, sharing stories about their own disabilities. 

I was delighted. Just because I was disabled and ill didn’t mean I couldn’t make a difference. Inspired, I signed up to an inclusive model agency, as I wanted to see more people like me represented in the media and society.  

And when I was well enough, I organised to do educational talks in schools and my community. 

The last year has been especially tough (Picture: Ruth Spurr)

I explain to children that yes, I’m disabled, but I’m also blonde. I like reading, but hate Brussell sprouts. Being in a wheelchair is just one small part of who I am, and in reality, I’m just like them.

A little girl wrote to me after one of them, telling me that after listening to me speak, she’d given a talk in her class about being dyslexic. I was so proud of her. 

The last year has been especially tough. I was taken into hospital with an infection last September and ended up with sepsis. Things didn’t look good, and I had serious talks with my parents about what to do if I didn’t make it home. 

For nearly nine months, I got one infection after another, had various surgeries, got Covid and got sepsis for a second time. 

It was devastating – my mum stayed with me and even Willow visited, but it was so hard to stay positive. 

I continued posting on my social media accounts as often as I could. It was my one way of staying in touch with the rest of the world. 

Thankfully, after 277 days, I was finally allowed out of hospital this April, and since then, I have remained stable. I have been swimming for the first time in 10 years with the aid of a dry-suit to keep my lines clean and free from infection, I’ve been on holiday to Cornwall and even celebrated a late Christmas with my family. 

No matter how short my life may be, it has been worthwhile (Picture: Ruth Spurr)

The thing with my condition, though, is that no matter how stable I can be, or for how long, once I get an infection, it can become so serious, so soon. 

To my shock, one of my TikTok followers messaged me to say that they’d nominated me for the Diversity Awards 2023. I was flattered, but dismissed it, thinking nothing would come of it.

Then, three months later, I received the email, congratulating me on making the shortlist.

I have been flying high ever since. 

The awards celebrate diversity champions and grassroots communities and the winners will be announced in September. I am still stunned to even get this far. 

I may never get to be a CEO of a large company, or a doctor, save lives in hospital, be a world-famous author, or even be a carer, like I planned.

But this nomination shows that, even from a hospital bed, at my most ill, I have still made a difference to the world, that I have touched people’s lives.  

And that means, no matter how short my life may be, it has been worthwhile.

As told to Sarah Whiteley

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I spent 277 days in hospital last year.