Two years ago, at the age of 6, my daughter Neve was diagnosed with a chronic invisible illness called Juvenile idiopathic arthritis (JIA).  

Overnight, our house went from one filled with music (particularly rock music) and carefree weekends out riding bikes or walking the dog to not knowing what we would face each day, whether Neve could join in or if we’d need to carry her because she was in too much pain or too tired from her medication.  She lost all confidence. She no longer danced or sang, and my bubbly little girl slipped further and further away as fear, pain and the trauma of her treatment, operations and medication took over. Every room felt unsafe. Every adult became untrustworthy. She constantly expected them to stick needles in her, pull her joints around and make her swallow foul tasting medication.

I started to become desperate. I tried everything to calm her, reassure her and help her to cope with things like weekly injections which left her screaming. She was terrified of having blood taken, which meant we had to have three adults physically restraining her to keep her safe. No mother wants to put their child through that trauma. Nothing me nor the medical and psychotherapy team did worked to help Neve or any of the family cope.

I found Teapot Trust by accident. It has given Neve her voice back. I’ll never forget the first art therapy session with Erin. Neve was hiding under the desk and clinging to me. I watched in awe as Erin skilfully, and gently, encouraged Neve to draw and paint. 

Unicorns featured often in Neve’s art works and particularly a beautiful strong unicorn called “Breathe”. Erin assisted Neve to use “Breathe” and her other characters to find words to understand and express what was happening to her and why.  A turning point was when Erin suggested Neve try modelling clay. Her arthritis has damaged her wrist and thumb in her right hand and the action of moulding the clay encouraged Neve to talk about what hurt. This is key to making sure early signs of possible lasting damage are picked up on and dealt with. 

The biggest challenge we face now is the ‘invisibility’ of the illness. Neve looks like every other child. Her pain and exhaustion aren't something others can see. Art Therapy has given her the words and the confidence to speak up when a child/adult’s words or actions hurt her, such as, “You don’t need a wheelchair- there’s nothing wrong with you”.  As a parent I liken it to the burden of “repeatedly having to come out” to every new set of friends / teachers / sports leaders to explain JIA and what it means for Neve.

Two years on and Neve is a much more confident young person and copes much better when I’m not around. The music is back!  Her and her twin brother recently won ‘Battle of the Bands’ and went to a recording studio for the day, after which I was informed confidently, “I’m a vocalist now mummy”! 

Yes there are days Neve struggles to get out of bed. But what Teapot Trust’s art therapy has given her is the confidence, the acceptance and the voice to be able to tell the world: “Today I’m not 100%.... This is the help I need today"… and that it is OK. 

I stepped up to Chair of Teapot Trust earlier this year. Driven by the deep passion to ensure that any young person diagnosed with a chronic invisible illness is aware of and can access the transformative power of Teapot Trust’s art therapy so they too can find their voice again. It brings light and colour to a very dark and scary place. It not only helps the young person but also their siblings and parents navigate the uneasy world of living with a chronic invisible illness.

The work we’re doing alongside Semple Begg, and with the generous support of Project Giving Back to create the Teapot Trust Elsewhere Garden at RHS Chelsea, will really help to raise awareness of Teapot Trust and what we do, and ultimately help more young people. I’m looking forward to seeing the designs realised and the eventual relocation to Glasgow Children’s hospital where more young people can escape to a safe place where their minds can go ‘elsewhere’.

Read a condensed version of Ruth's opinion piece in the Herald and learn more about Ruth and how she became Teapot Trust's Chair of Trustees here.