Grieving with a chronic illness

Ally Lloyd, Young Voices Participation Officer & Art Therapy Project Coordinator at Teapot Trust, discusses the complex interplay of stresses for young people dealing with both bereavement and a chronic illness

“Grief is difficult for everybody, but there’s an added complexity when you’re chronically ill because, as we know, for a lot of us, stress is not the best thing for our bodies, and grief is surprisingly stressful. It’s upsetting and it’s difficult, so it can have a real impact on your physical health.”

– Ella

Sharing these thoughts with Teapot Trust’s Young Voices, Ella shows us that grief and bereavement are incredibly difficult for any children and young people to experience, and for the one in eight children and young people who live with a chronic illness experiencing both can be complex, messy, and misunderstood.

There are similarities in both experiences – they have a big effect on your body and how you feel, they can both make you feel like your world has been turned upside down, and adults often don’t know what to say to you.

A group of volunteers from Winston’s Wish Youth Team and Teapot Trust’s Young Voices who had experience of chronic illness and bereavement came together to make a difference.

The group met for the first time in February 2025, and over the next few months explored the complexities of chronic illness and bereavement and what we, as two charities, could do collaboratively. Sessions were facilitated by an art therapist and bereavement councillor, and the direction of the project was led by the group.

The group kept returning to how isolating it was to experience chronic illness and bereavement, and how transformative being in community with each other was. They wanted everyone in their shoes to have that positive experience, and so a priority for their work together was creating a resource that could help other children and young people to feel seen and understood.

Another shared experience was adults in supporting roles (for example teachers, healthcare staff, youth workers) not understanding either their chronic illness or grief and not understanding how the two interacted and affected them. This led to them often having to take the role of ‘educator’ in situations where they needed support. Creating a resource to prevent this became a second priority.

The group landed on creating two sets of resources: a podcast and PDF for young people, and for those supporting them – for example healthcare staff, teachers, and youth workers. The conversations in the podcasts are warm, open, and generous. Across the podcasts and resources the group cover:

• Community grief
• Grief impacting your body and illness
• Complicated timelines
• Medical spaces
• Supporting us (for the adults in our lives)
• Understanding our experiences
• Listen to us
• Acknowledgement goes a long way
• Your words matter
• It is okay if you are not the right person to help.

The work of this incredible group, and the resources they created are just the beginning. Please listen, read, share, and think about what you can do to support bereaved children and young people with chronic illness.

“If you are a young person reading this, it might feel like you are the only person who is experiencing this. We promise you are not alone, and we hope that reading and listening to our experiences is helpful and makes you feel seen and heard”

– Ella

Click here to access Teapot Trust’s Chronic Illness and Bereavement resources.

Teapot Trust will be working with Enquire on a webinar to support professionals to understand how long-term health conditions can impact on children and young people’s education. Sign up or find out more here!