Who Gets to Decide Who You Are?
Dr. Moa Lundstrom is a Counselling Psychologist and Founding Director of The London Practice, one of London’s leading private therapy clinics. Her work integrates psychology, existential thought, and evidence-based approaches to explore well-being, meaning, and what it means to live well.
Most of us will never be diagnosed with schizophrenia. Yet many of us know what it is like to have somebody else tell us who we are. Perhaps you were the difficult child. The anxious one. The underachiever. The person who “always overreacts”. The employee who is “not leadership material”.
Labels can be useful. They allow us to organise an impossibly complicated world. But a description of us should never feel more powerful than our own experience of ourselves.
For my doctoral research in existential counselling psychology, I interviewed people who had received a diagnosis of schizophrenia but disagreed that the diagnosis accurately described them. I was not trying to determine whether their diagnosis was correct or incorrect. I wanted to understand something quite different: what is it like to be given a powerful definition of yourself that you do not recognise as your own?
What I found went beyond psychiatry and spoke to something deeply human: our need to be recognised, to make sense of who we are, and to have some say in the stories told about our lives.
The participants spoke about identity, belonging, being believed, the pressure to appear “normal”, the need to make sense of their lives, and the hope of moving towards a better future.
In their very particular circumstances, I began to recognise struggles that are surprisingly universal. Schizophrenia itself is relatively uncommon. WHO estimates the worldwide prevalence at 0.29% of the population. Yet few psychiatric labels carry so much cultural weight. A relatively small number of people receive the diagnosis, but most of us already have some idea of what we think the word means. That is partly where the problem of labels begins.
We all need a story about who we are
Human beings are storytellers. We take thousands of disconnected experiences and weave them into something resembling a life story, gradually forming an understanding of what has happened to us, why we are the way we are, what matters to us, and where we hope our lives might be going.
Psychologists sometimes call this our self-narrative. It is not a perfect or objective record of everything that has happened, but an evolving story through which we make sense of our experiences and, ultimately, of ourselves.
One of the strongest themes in my research was the participants’ need to create a coherent sense of themselves independently of the psychiatric label they had been given.
All of us carry competing versions of ourselves. There is who we believe ourselves to be, who our parents think we are, who our partners experience us as, who our colleagues expect us to be, and who society tells us we ought to become.
Problems can arise when an external definition becomes so dominant that there is no room left for the person underneath it. We see this far beyond healthcare.
We lose a job and start to think, “I am a failure.” A relationship ends, and the story shifts to, “I am unlovable.” A difficult year leaves us wondering whether we are weak. A mistake can begin to feel like evidence that we are a bad person. A diagnosis can grow so large that it overshadows every other part of who we are.
Self-knowledge asks us to remain open to descriptions of ourselves that may be uncomfortable. Sometimes other people notice things about us that we struggle to see ourselves. The challenge is to consider what may be true from their perspective without letting their version of us replace our own.
A label should explain something, not erase everything
Language has enormous psychological power. The history of the word schizophrenia is interesting in this respect. Swiss psychiatrist Eugen Bleuler introduced the term in the early twentieth century, replacing the earlier dementia praecox (literally “premature dementia”). Bleuler coined schizophrenia to describe what he understood as a “splitting” or fragmentation of psychological functions. But words do not remain confined to the meanings their creators give them.
Over time, schizophrenia accumulated associations of its own. It entered popular culture. It became linked with ideas about dangerousness, unpredictability, incompetence, and “split personality”. A clinical word gradually acquired a social identity.
That difference between describing an experience and defining a person became particularly important in my research. There is a subtle but powerful shift between saying that somebody has schizophrenia and describing them as schizophrenic. The first describes something about a person. The second sounds like a description of who that person is.
Several participants felt that once the label was present, other parts of them disappeared from view. The meanings we attach to labels influence how we subsequently see and understand ourselves. A word that begins as an attempt to describe something can gradually start organising an identity. That is hardly unique to psychiatry.
Think about the labels you use for yourself. Introvert. Perfectionist. Traumatised. Successful. Depressed. Lazy. attention-deficit/hyperactivity disorder (ADHD). Difficult. People-pleaser. Bad with money. Not academic.
Some words may help us understand patterns in ourselves. The danger arrives when a useful description becomes a straitjacket.
“I sometimes behave like this” turns into “this is who I am.”
As identity hardens, it becomes easier to lose flexibility, and the possibility of being or doing something else shrinks. Perhaps healthier labels are held lightly. They tell us something without claiming to tell us everything.
Notice the price you pay for belonging
Another major theme in the research was social belonging. The participants wanted connection. They wanted valued roles in society, to be seen as people rather than outsiders. They were acutely aware of ideas about what counted as “normal” and whether they belonged to that group.
Human beings need belonging, yet belonging often asks something from us. We learn which opinions are acceptable in our family and which emotions are acceptable at work. We absorb ideas about how ambitious or attractive we should be, and how a man or woman of our age is supposed to behave.
So many of us make countless small compromises every day between being ourselves and being accepted. But the question is: How much of ourselves are we giving up in order to belong?
When does adaptation allow us to live alongside others, and when does it require abandoning something important in ourselves?
There is no simple formula. Being ourselves does not mean saying everything we think or disregarding the effect we have on other people. But belonging shouldn't require us to disappear.
Hope is not naive, it changes the direction of a life
Hope for the future was something the participants rarely spoke about directly, yet it was strongly present in their stories. In different ways, they were all trying to move towards a better future. This felt particularly important when considering the history of schizophrenia.
For generations, schizophrenia has been associated with a pessimistic prognosis. Early psychiatric thinking presented it as a chronic, deteriorating condition, and that assumption continued to influence the way the diagnosis was understood long afterward. Yet long-term research shows a much more varied and often more hopeful picture.
One major international study followed people with schizophrenia across 18 diverse cohorts over 15 or 25 years. At long-term follow-up, close to half were rated as globally recovered, although outcomes varied considerably between locations. Long-term research repeatedly shows substantial variation in outcomes, and social circumstances, relationships, and support can all play an important part in how a person's life unfolds.
Studies like these are important because a prognosis is also a story. What happens when somebody is told, explicitly or implicitly, that the rest of their life will be defined by an illness? What changes when the possibility of recovery remains part of the conversation? The same question applies to the stories we tell ourselves.
The stories we accept about ourselves do not only explain our past, they also shape the futures we believe are available to us.
Tell someone repeatedly that their future is limited and they may begin organising their life around limitation. Tell yourself repeatedly that you always fail, cannot change, are too damaged, too old, or simply “not that kind of person”, and those conclusions can begin to shape the choices you make.
A self-narrative is therefore never just a description, it is also a direction of travel. Perhaps one of the most important questions we can ask ourselves is:
"Is the story I currently tell about myself compatible with the future I want to live?"
If not, we may need to become curious about whether the story, rather than the person, needs changing.
You are more than the strongest story told about you
My doctoral research began with a very specific group of people confronting one of psychiatry’s most powerful diagnostic labels.
However, their stories brought me back to questions that belong to all of us.
Who gets to define me?
How much of other people's perception of me should I accept?
How do I belong without losing myself?
Can I acknowledge suffering without turning suffering into my identity?
What kind of story about myself allows me to keep moving?
We need other people to help us see ourselves clearly. None of us has perfect self-knowledge, and being true to ourselves should never become an excuse to refuse reflection, responsibility, or change. But neither should somebody else's description of us become the final word.
Perhaps psychological wellbeing requires an ongoing conversation between the person we have been, the person others experience us to be, and the person we are still capable of becoming.
We are shaped by what happens to us and influenced by the labels we are given. We need other people, and inevitably adapt ourselves to belong amongst them.
Yet within all of this remains one deeply human task: to continue participating in the authorship of our own lives. Because whatever labels we carry, no single word should ever be allowed to contain an entire human being.
Read more from Dr. Moa Lundstrom
Dr. Moa Lundstrom, Counselling Psychologist & Founding Director
Dr. Moa Lundstrom is a Counselling Psychologist and Founding Director of The London Practice. Interested in the intersection of psychology, philosophy and human experience, her work explores how people understand themselves beyond expectation, habit and the pull of the crowd. Through her writing, she examines wellbeing, meaning, and what it means to live thoughtfully.
