“There was just too much crap going on inside my head for me to want to open it, but maybe I should have done it.”
Every eight hours someone in the United Kingdom sustains a spinal cord injury, either through accident or illness. One of those people was Anne*. She was only 18-years-old when a blood vessel in her neck burst and bled into her spinal cord, causing permanent paralysis from the chest down. Aside from the physical barriers, the injury also had a significant impact on her mental health.
Anne was on her way back from an audition at the Royal College of Music when the blood vessel burst. When it first happened, she didn’t realise how serious the situation was. She told the IPF: “I thought that as it had all happened so suddenly it would just suddenly get better.”
“Never did I think that this was going to be permanent.”
Anne ended up spending eight months in a specialist spinal cord injury centre in Salisbury, where she went through intense rehabilitation. Rehabilitation at spinal centres mainly focuses on the physical aspect of spinal cord injury and teaches patients how to live their lives in a wheelchair.
However, most newly injured people suffer from mental health issues as well, including depression. Research conducted by Back Up, a national charity helping people affected by spinal cord injury, found that 20% of people leave NHS spinal centres clinically depressed, while 32% have clinical anxiety. Anne was never diagnosed with depression, but she struggled to adjust to life with spinal cord injury.
“I was really looking forward to making the next step in my life and becoming independent but instead I was totally dependent again.”
The spinal centre where she was hospitalised was three and half hours away from home, making it difficult for her friends to come see her. Even though her family visited her frequently, Anne started to feel isolated. Her injury also crushed her dream of pursuing a career in music, forcing her to change her plans.
Interacting with friends and family
While in the spinal centre, Anne received some mental health support but it was hard for her to open up to others. Speaking to the IPF, she reflected on the time: “There was just too much crap going on inside my head for me to want to open it, but maybe I should have done it.”
Because of how she was feeling, Anne took her anger out on her loved ones, particularly her parents.
“They could not understand what I was going through which must have been really hard for them. It makes me upset to think about how they must have been feeling. I would chat with them and get really annoyed if they drew attention to my disability. I desperately wanted to be normal again.”
Being home after being discharged from hospital was also a difficult experience. Anne spent most of the time by herself as her parents were at work and her siblings were at school. This made her decide to go back to college as soon as she could.
“I felt like I was really missing out on life and that was really frustrating.”
After college, Anne went on to study a degree in languages, giving her the opportunity to study in Italy and France. This was when she had the chance to look after herself independently, without support from her parents or carers: “I realised I could live by myself just like anyone else.”
Studying and working with a spinal cord injury
After one year living abroad, Anne returned to England but lacked the motivation to carry on studying. At the time, she didn’t feel like she was good enough to keep up with her course mates.
“I went and saw a counsellor but I was rolling my eyes at everything she said to me,” she said. The counsellor wasn’t spinal cord injured herself and Anne didn’t feel comfortable speaking about problems that only people who are paralysed face.
Anne believes that meeting people in a similar situation is what really makes a difference. Thinking back, she said she would have benefitted from speaking to someone going through the same struggles, such as going back to school or work.
Research suggests that only 17% of people with spinal cord injury are in employment. Anne also knows young people who are extremely unmotivated to go back to school after their injury.
“Just having that routine and things to do keeps your brain busy and stops you dwelling on other things and gives you something to aim for.”
Anne’s mental health has been improving, but she explained that she still has days when she feels down:
“Sometimes I end up not wanting to move to my kitchen just to get some water and I just have my head on the desk for ages thinking the world hates me.
“But then I will just get a text from a friend asking me if I want to go for a drink and I will tell myself to stop being an idiot and to go do something. Or I will somehow force myself to go outside. Fresh air always helps.”
Six years after becoming paralysed, Anne has now done things she never thought would be possible.
“I have skydived, waterskied and travelled the world.”
As a typical 20-something, her plans for the future are uncertain. She wants to get paid for doing something she loves and, despite the challenges, keep on living an exciting and rewarding life.
*The interviewee’s name has been changed to protect her privacy.