Helping Build What You Once Needed: The emotional cost of lived experience in PPI

by Jennifer Mohammadi, Research Assistant, King's College London's Faculty of Nursing, Midwifery & Palliative Care

We often talk about what lived experience adds to research and services. We talk less about what it can cost the person bringing it. Helping to build something you once needed can bring a sense of pride and purpose, but it can also bring grief for what wasn’t there when you needed it.

For me, lived experience has shaped the way I work. It helps me notice things I might otherwise miss, understand quickly why something matters, and see how a process that looks fine on paper might feel very different to the person on the receiving end.

It also means the work can affect me personally. When the subject of your work is part of your own life or history, there isn’t always a clear line between professional insight and personal impact.

I know this in more than one part of my life. I live with type 1 diabetes and now work and study in diabetes too. I am also care-experienced, and over the years have worked and volunteered in social care and with organisations supporting care-experienced young people.

That background gives me a clear sense of why the work matters, but it also means some things stay with me more than I expect. I might hear something in a Patient & Public Involvement (PPI) session, respond to it in the moment and carry on with the meeting, then realise later that it has touched on something in my own experience.

What has surprised me most is that it’s not only the difficult parts of the work that can do that. Sometimes the positive moments, and the progress you’re helping create, can bring up just as much.

A good example of this for me was when I used to sit on a fostering panel. People sometimes assumed the hardest cases would be the ones where a foster carer’s approval was being terminated. Given my own experience of foster care, that probably seemed like the obvious thing that would be difficult.

However, the cases that stayed with me most were often the really positive ones. We would meet prospective foster carers who were thoughtful, emotionally aware and understood that a child coming into their home might bring fear, mistrust and difficult experiences with them. They spoke about patience, consistency and trying to understand what was behind a child’s behaviour.

I would leave those meetings genuinely pleased that a child might grow up with people like that, whilst also wondering how different my own life might have been if I had been placed with someone similar. Sometimes that feeling stayed with me for days.

Grief is probably the closest word I have for it. Seeing what good care can look like can also make you more aware of what was missing in your own experience. The positive outcome is still positive, but it can carry a sense of what might have been.

I recognise that same feeling now in diabetes research. I work on D-stress, a research programme looking at how diabetes distress can be better recognised, prevented and supported as part of routine type 1 diabetes care. Diabetes distress is the emotional burden that can come with the constant demands of living with and managing diabetes.

I’m proud to be part of work trying to make that support better. At the same time, there are moments when I think about how useful some of this would have been to me years ago. Better language for what I was experiencing, someone recognising distress sooner, or care that took the emotional impact of living with diabetes more seriously could have changed a lot for me.

For me, this has meant getting better at recognising when I need some distance. I don’t have to join every conversation about diabetes or care experience. I can decide what I share, and I can acknowledge that something has affected me without treating that as a problem or as evidence that I’m somehow less professional.

I also think it has changed the way I understand positive change. Helping to create something better can feel deeply rewarding, but it can also make you look back at what wasn’t there for you, and both of those things are part of the experience.

If we want people to bring lived experience into research and services, we must value the person carrying it, not just the insight they bring. We should create spaces in PPI in which people can choose what they share, step back without explanation and receive support when it touches their own lives. The value of the contribution shouldn’t make us overlook what it can take from the person giving it.