Back to the drawing board

In 2012 Sophie Kear was coming to the end of her course in animation at the University of West London. Over two years, she had received impressive results and had her sights set on a career in film and TV animation.

But, just a couple of months into her final year, everything had ground to a halt, as her body began seizing up in pain and she struggled to even sit at a computer.

Sophie remembered: “It felt sudden, but actually the onset of pain was gradual, sneaking up on me. I was a social person, so I’d shake off niggling pains and dance at a gig, or do mammoth sessions practising my animation.

But soon I couldn’t get a t-shirt over my head without help and struggled to walk to the bus stop. I graduated that July with a walking stick.”

Sophie, who had always had mobile joints, was diagnosed with hypermobility syndrome, fibromyalgia, chronic fatigue and suspected Ehlers Danlos Syndrome (EDS), a connective tissue disorder.

Sophie’s social life went from the bright lights of London to being confined to a single room of her parents’ townhouse in Maidstone.

She said: “I had a bedroom in the attic, but couldn’t manage the stairs so I stayed up there. I had a coffee machine, fridge, bathroom and exercise equipment – I was hoping I could ‘fix’ things with workouts. In reality, the things I tried made it worse.”

Alone and unable to see friends, Sophie’s mental health spiralled downwards.

She said: “There was no way I could travel to animation studios for work. I felt like my life’s dream was over and I mourned the person I was meant to be.”

By 2018, Sophie had moved in with her grandmother, who had a bungalow and wet-room. While she adored her grandmother, the reality of life was difficult.

She reflected: “I was 28 with no job, no partner, living in an adapted bungalow. I felt shame.”

A chance encounter on Facebook led Sophie to Sean, a local tattoo artist, who she fell in love with, a first step on her path to feeling better.

Sophie said: “In lockdown, Sean became my live-in carer. By then, I had also had gastropareses, which causes vomiting and I was recovering from appendicitis. Sean swept in and looked after me – fixing my wheelchair and helping me get around. He even carved me a walking stick from wood.

I was shielding, but it made our bond stronger. Sean has three children and becoming their step-mum gave me another reason to keep going.”

While Sophie found someone to share life with, she had no escape from her symptoms.

“Things escalated,” Sophie admitted. “I was vomiting all the time, which sometimes left me hospitalised. I dropped four dress sizes.”

With Sean’s support, Sophie decided that instead of finding a cure, she’d find a way to live with her symptoms and last year, sought a psychological referral through her GP.

Sophie was referred to the KCHFT Pain Management Programme, which runs for eight weeks and teaches people strategies to manage their pain.

Sophie said: “I realised I had a parasitic relationship with pain. I was living for it and in service to it. Everything in my life was reduced down to it. I was scared to change.”

But when she walked into the community centre in Aylesford, she was met with a wave of understanding:
“I was worried I wasn’t ‘worthy’, but everyone gave me validation. We all wanted help, we all needed friendships. I’d found my place in the world.”

Group attendees are encouraged to monitor their activity levels and symptoms to help them to work out what they can and can’t manage. They are also taught self-acceptance techniques.

Sophie noted: “I learned that as my body changed into one ridden with pain, I wasn’t listening to it anymore, so I tried to really tune in.

After a few sessions, I was able to sit at my computer and start some basic animations. I hadn’t done that in 10 years. It took me weeks, rather than hours, but I did it.”

Sophie is now proudly running her own animations channel online, with the hope that one day, she will be commissioned.

She said: “It’s tiny steps, but without the course, I’d be stood still. I now have the confidence to navigate life with my new body and that’s worth celebrating.”

'We can't remove pain, but we can reduce suffering'

KCHFT Counselling Psychologist, Jamie Kirkham reflects on the Pain Management Programme.

“The eight-week Pain Management Programme (PMP) helps people to live and cope with chronic pain, without surgery or additional medication.

“We focus on the inner voice, how we can shift our attitudes and behaviours to help manage pain. We can’t take away the pain, but we can remove the suffering that comes with it.

“Then using things like pacing activities – working towards things very slowly, acceptance, conditional behavioural therapy and mood-regulation through meditation – we slowly work towards management of pain.

“The peer-support element is really important, too. We see friendships blossom and continue into the future. People have a ready-made support network for life, who truly understand what they are going through.”

To attend our PMP sessions, you must be referred by your GP.