Katy’s story: Fresh opportunities after spinal cord injury

8 January 2025

Read on for a blog from Katy, who discovered fresh opportunities after spinal cord injury when she was supported by our life-changing services.

I received a diagnosis of Multiple Sclerosis in 2012 – after six months of the condition deteriorating, and my ability to do anything slowly getting more difficult. This ended up developing into a spinal cord injury. Multiple Sclerosis meant that my body’s own immune system was attacking my nervous system, resulting on lesions on my spinal cord at C2 – C6, T8 and T9 levels. These eventually scarred over, leaving me with an incomplete spinal cord injury.

This was life-changing. It affected me physically, meaning I could no longer control my bladder and bowels, sit up without support, or usefully use my left arm. I now use a wheelchair full-time to get around, a Neater Eater to eat, assistive technology to work and many more gadgets to make life better.

My condition was traumatic and it’s ongoing. It is like I am on a slow-motion car crash into a wall, not knowing what would come next. Because of the nature of my injury there was a lot more uncertainty. Most recently my left optic nerve has been attacked so I can’t see out of my left eye anymore.

From speaking with people who have had injuries through accidents, I found that the support they get is different. You will likely go through a spinal centre. In my case, I have to wait for community rehab for three to four months, each time an attack happens. You spend that time waiting, trying to figure out how to live again.

It wasn’t until I spoke to my consultant that I realised support was out there. She told me I should stop thinking about myself as someone with MS, and think of myself as someone with a spinal cord injury – and that charities like Back Up could provide practical support.

I contacted Back Up, and was paired up with a mentor – someone had experience of living well after spinal cord injury. Every month I had an hour long meeting with my mentor – and it was like someone had finally opened the blinds on what I had been missing. I could finally talk to someone who just got it.

My mentor had a similar level injury to me, so she understood what I was going through thanks to her lived experiences. Just talking to someone outside a medical environment was awesome – and after a number of months, she really got me out of a bad place.

After, my mentor suggested I go on a Back Up What Next? course. This virtual service was life-changing too. I was able to surround myself with others with a spinal cord injury based all around the country. We were able to talk freely about what we were experiencing. It wasn’t like the 15-minute medical appointments I’d experienced previously – it was a place where we could share practical tips for living well.

The last part of this course was all about planning for the future. At the start of the course I was unsure of what to expect from joining it – but by the end, I was making plans to travel to America! What a transformation.

Back Up gave me the confidence to travel to America – as well as showing me it was possible to do other things. I now run my own business, Towards Belonging Ltd, bridging the gap between the disabled community and engineering industry. This means I now travel around the UK for work helping engineers understand how to build accessible and inclusive spaces while also giving disabled people a voice. Thanks to Back Up, I can travel on trains, buses, and taxis with confidence. I have now had access to opportunities I had never even thought about before my diagnosis.

We’re glad our services have helped Katy live life to the full after spinal cord injury. Visit our website to register for support.