Brighouse woman shares her experience of living with spinal cord injury at Houses of Parliament event

Freya Lloyd, 27, sustained a spinal cord injury as a baby that has affected her for her entire life.

After years of hiding her disability from those around her, Freya has attended a parliamentary reception to share her experiences of growing up with the injury, and her struggles to receive proper bladder care.

The reception brought together patients, their advocates, and clinicians to discuss urinary continence care, which affects 14 million people in the UK.

At 18-months-old, Freya was diagnosed with transverse myelitis, a rare infection that causes spinal cord injury. Symptoms can include paralysis, loss of sensation, chronic pain, and loss of bladder and bowel function.

Freya was initially paralysed from the waist down, and doctors told her parents to be prepared for the possibility that she may not be able to walk. However, with intense physiotherapy and specialist treatment, Freya learnt to walk unaided, but her lack of bladder control had always had the biggest impact on her life.

Freya said: “I learnt to self-catheterise very young, and that level of responsibility created anxiety. At school, I tried to hide it, but I faced bullying, and people spread rumours. I can still remember exactly what was said. It had a deep emotional impact and contributed to low self-esteem and isolation during those years.”

Growing up, Freya was told “you’re like everyone else”, which ultimately led to her hiding her disability and prevented her from seeking support.

However, after years of struggling with the medical system, Freya is speaking up about her disability and is keen to advocate for other people with spinal cord injuries. She has attended the parliamentary reception held by the Urology Foundation, Spinal Injuries Association, and Urology Trade Association, and sponsored by Danny Beales MP.

Freya shared her experiences of navigating the medical system as a young person with a hidden disability, recounting a particularly traumatic time in her life when, at 18-years-old, she was admitted to hospital with stage four kidney damage and renal failure.

For three years, she experienced constant trips back to the hospital with infections.

Reflecting on this time in her life, Freya said: “During those three years, I endured excruciatingly painful catheter changes. I was misdiagnosed, given the wrong treatments, and left to manage alone, missing work, struggling to care for myself, and falling behind while those around me moved forward.”

Her experiences had a lasting impact on Freya. She said: “I’ve experienced PTSD from repeated emergency hospital visits and surgeries. Every infection brings back those memories.

"I’ve also struggled with anxiety, particularly in medical settings, and there were times when I felt completely out of control. But I’ve also worked hard to rebuild my confidence and take ownership of my condition. Mental health support hasn’t always been easy to access, but it’s something I now prioritise.

“No one should have to reach breaking point before they are taken seriously. No one should have to prove how much they’re hurting just to receive appropriate care. And no one should be made to feel too young, too healthy-looking, or not disabled enough to deserve help.

“Poor bladder care doesn’t just affect your physical health – it has a ripple effect. It affects your confidence, your relationships, and even your willingness to socialise and be the person you are outside of your disability. What we need is education, consistency, and compassion.

“Healthcare professionals must be trained to understand the specific care needs of people with spinal cord injuries. We need systems that will empower us, not isolate us. And we need to be part of the conversations that shape policy, because we are the ones living this reality.”