WHAT WE WISH SOMEONE HAD TOLD US is an ongoing project focused on telling the stories of people living with schizophrenia.
Schizophrenia—a severe mental illness that impacts a person’s experiences, social interactions, and thought processes—affects about 1.5 million people in the US per year.
When you think of schizophrenia, what are the very first words that come to mind? The media and entertainment industry has had a central role in creating and maintaining wrong ideas about the condition. For example, even though people with schizophrenia are often portrayed as violent, most are more likely to be victims of violence. Schizophrenia is thus a double illness: One has to deal with the condition and with the additional negative impact of the stigma, prejudice, and discrimination associated with it, which tragically impact people’s lives, their opportunities, and their treatment.
As a scientist working on schizophrenia, I know very little about what causes this condition. But I acknowledge that my attempts to better understand the illness have not led to the reduction of the stigma, discrimination, and prejudice that people who live with schizophrenia face. This project was born from that frustration. As a photographer, my goal is to increase empathy and identification; to highlight the fact that, as Roy Grinker puts it, normality and abnormality are fictional lands no one inhabits.
Leon, 47 years old, was diagnosed with schizophrenia in his early twenties after a period of houselessness between 1995 and 1998. Certain atypical experiences remain. "It is like dancing with wolves", he says. Though he is still "trying to beg god for forgiveness", he has been stable and able to gain autonomy and plans to re-enroll in college. "You can become whole again once you gain perspective. It's terrifying, but through people who care, you can make the best of what you fell apart from. And what you fell apart from is all that you were".
Young Leon knew something was wrong with him, but believed it was his responsibility to solve it. It was only years later, after meeting a psychiatrist supporting unhoused people, that he became aware of his diagnosis and realized he was not entirely alone.
Leon shows me around his apartment. Currently, Leon lives in a transition apartment, which he shares with one man. He is in the second stage of supported housing, on the path toward independence. This specific program of supported housing is exclusively for people with mental illness who can live independently with minimal support and have a significant period of psychiatric stability. Residents are asked to engage regularly with their case manager and to attend daily structured activities. Leon visits his case manager weekly, on Monday, and keeps regular appointments with his psychiatrist.
Danny, 23 years old, was diagnosed with schizophrenia at 19. To him, the disorder is a "war inside your own head". "Most people make decisions based on feelings and thoughts, but what if those feelings and thoughts are not yours?".
The fear of not being enough, of not having accomplished enough is apparent. But so is his willingness to overcome such fear: "I don't want to only function, I want to do great things", he says. Danny is currently writing fiction and plans to enroll in a writing program.
Danny asks me to take a photo of him balancing a coin—as a reflection of his own balancing in life and a reminder that, regardless of what others may think, he is happy to be himself.
The building of meaningful relationships is something Danny has struggled with: "As much as I tried, as much as I wanted to... I never felt like I connected with people". But as the relationship with his cousin, with whom he often works out, develops, so does the confidence on his social skills. The workout sessions are essential. Danny feels whole, he conquers his fears: "The gym saved us", he explains. Later, he adds: "Actually, it was my cousin who saved me, he knows me like no one else in this world".
Lily Li, 48 years old, born in Vietnam, was diagnosed with schizophrenia in her mid 20s. At that time, the hallucinations were constant: "I was there in the flesh, but the spirit and the soul were not there, were being controlled", she says, "the voices frightened me, but I was afraid to talk about it, I kept it to myself", she adds.
Being surrounded by people who "didn't believe in psychiatry", her path to treatment was lengthy. After many years and failures, the medication has stabilized her symptoms: "I've been awake for the past 5 years", she says.
"Can I smoke a cigarette?", Lily asks. "I don't want to live too old, I want to die young. I love old people, but they don't look too good".