A lot of what we do is about finding ways to improve the experience someone has of living with a particular disease, long-term treatment or ongoing healthcare support.
One thing I find super interesting is the relationship people have with their own health, what shapes it and how it can change overtime. So much of how we behave and what we believe when it comes to our health is ingrained in us far more deeply than any specific healthcare moments or transactions we may have experienced. There’s cultural influence, family dynamics, social contexts and the media, but there’s also genetics, our values, our lifestyle and our past experiences. How we feel about our health and the role it plays in our lives is part of our individuality and, ultimately, our identity.
But when we get sick, or when something changes, how and when does that become so deeply embedded that it shifts our sense of identity?
If we start by thinking about conditions that are diagnosed early in life, such as type 1 diabetes, haemophilia, cystic fibrosis and some rare diseases, we see some interesting differences. For some people, living with these conditions becomes an accepted and openly shared part of who they are. Others may be much more reluctant to let their condition define them. Neither response is more valid than the other. A health condition can be part of someone's identity without being central to how they see themselves, and the relationship someone has with their condition can be very different from the condition's role in their day-to-day life.
Then we look at chronic illnesses diagnosed later in life. When someone receives a diagnosis that is likely to stay with them long-term, that alone can be the beginning of a shift in identity. For example, someone diagnosed with an autoimmune condition or experiencing long-COVID might establish a ‘new normal’, reshaping their daily life, behaviours and even beliefs as a result. Others may see their condition as having a more limited role in their identity and hold more tightly to their life ‘before’. And of course, these feelings can change over time. So many factors can influence how someone responds: age, the information they receive, the severity and impact of their symptoms, the support available to them and their access to healthcare, to name just a few.
For some, it might be the practical changes that come with a condition that make the difference. For example, someone diagnosed with sleep apnoea may suddenly need to use a CPAP machine every night. The equipment, cleaning and ritual of using it become part of everyday life. Over time, that routine might change how they think about their health and their relationship with it. For others, it may simply become another thing they do, without fundamentally changing how they see themselves.
Or it might be about a change in care and responsibility. We see some really interesting dynamics when it comes to identity as young people transition from paediatric to adult healthcare services, gradually taking on more control and making more decisions about their own health. How that transition is experienced could have a lasting influence on how someone relates to their health in the future.
Maybe just as important as understanding how and when identity can shift is recognising when that shift feels positive and when it doesn't, and therefore considering what support, reassurance or reinforcement we might need to provide as part of someone's experience at any given time.
A shift in identity might encourage new, positive habits and prompt us to re-evaluate certain beliefs and behaviours. It can be a powerful catalyst for change. But it can also come with an emotional load, creating a burden that goes beyond the illness or diagnosis itself.
Think of someone diagnosed with ADHD in adulthood. The diagnosis may bring validation and reassurance, helping them make sense of years of unexplained feelings or behaviours and perhaps increasing their self-confidence. But it might also be confronting, bring feelings of sadness or isolation, or prompt a deep questioning of their sense of self and identity. For some, it may be both: relief at finally understanding themselves, alongside difficult feelings about what that understanding means for their past and future.
I don’t have the answers, and ultimately, I believe our health identity is just that: our own. It is deeply personal, shaped by our individual experiences and the unique fabric that make us who we are. But that doesn't mean we can't consider it when it comes to how we design and create experiences for different people and communities.
Anyway, I’m no psychologist, and I’m sure some of the behavioural scientists I work with would have something to say about my ramblings! But I do think it’s important that we at least ask ourselves when a shift in identity might be happening, how it might be affecting someone and what that means for the experience they need.
We may not be able to determine how someone feels about their health, but we can do our best to create experiences that recognise, respect and respond to those feelings, offering empathy, support and care along the way.