I met my new neighbor for the first time a week after she'd moved in. Jill was a petite brunette who laughed easily and told me she’d majored in art history. Luckily, she'd found a job in publishing. Wearing jeans and a t-shirt, she looked exactly like what she was: a recent college grad trying her luck in the city. Our schedules didn’t sync so about six months went by before I saw her again. This time, I mainly noticed conservative clothes and a serious expression: a professional woman had been born. We ran into one another at random times. Time passed. Climbing the stairs, I saw her standing motionless outside her door, the keys dangling from her hand. I said hello and she turned and wordlessly stared at me. I asked if she was OK. She mumbled and then shifted her glance as if trying to hear a distant sound. I asked again, and this time she said nothing. She didn’t appear to be upset or in pain or drunk or in danger. I went inside my apartment. After half an hour, I heard her door open and shut.
Two months later, I saw Jill’s mother — the family resemblance was obvious — standing in the hall. In a jumbled rush, the distraught woman confided in me: Jill had just been diagnosed with schizophrenia. Before I could speak, Jill opened her door. She looked even more remote, more lost inside her own head. Catching her mother’s eye, I felt miserable as well.
Schizophrenia is a chronic brain disorder with symptoms that may include delusions, hallucinations, trouble with thinking and concentration, and a lack of motivation. The disorder affects slightly more than one percent of the population and is found to run in families. For this reason, scientists believe there is a genetic component to the illness, though too little is known of its exact cause. Schizophrenia typically begins in early adulthood, with the average age of onset for men being 18 and for women, 25. It is extremely rare for schizophrenia to begin under the age of 10 or over the age of 40.
“My son, aged 43, was diagnosed with schizophrenia when he was 19 years old,” wrote a caregiver in a publication by the British Psychological Society. “My son had a disturbed childhood. He did not talk until he was 2 years old and had obsessional habits such as constantly twirling objects and spinning around and around. When he went to school he had concentration difficulties and did not read until he was 8. However, he was very musical and played the trumpet and the guitar.”
Although treatment may relieve symptoms, the condition is lifelong. Like many mental health conditions, schizophrenia cycles through active and inactive periods. The positive news is many people find that with experience and proper therapy, they better understand their condition over time and so find better ways to manage symptoms. In many cases, symptoms may lessen as a patient grows older. To those on the outside, people with schizophrenia may appear one way: They don’t always make sense when they talk. They may pause unexpectedly in the midst of conversation or sit for hours without moving or talking. Sometimes people with this illness appear absolutely average until they speak and their thoughts come to light. On the inside, schizophrenia is another matter.
“As early as five I heard voices. I didn't speak in school, teachers hated me,” posted a mother in South Carolina on a mental illness website. “I began [to] self-mutilate. It was the only way I could release the pain I felt inside. I was bottled up inside, the voices were unusually mean and a torrent of insults everyday.” Sometimes, people with schizophrenia believe other people are reading their minds, plotting to harm them, or controlling their thoughts.
“I was diagnosed as having schizophrenia in the 1980s when I was in my mid 20s, although in retrospect I had some delusions and hallucinations when I was at university,” wrote another patient for the British publication. “I was hearing voices and was reading strange meanings into what was going on around me. At one point I ran away to Scotland because I was so scared of what was happening inside my head [...] In the end I took an overdose and was going to cut my wrists so friends called the campus doctor.” After years of effort, “working my way through 29 different antidepressants, antipsychotics, mood stabilizers and anxiolytics,” this patient found a combination of drugs that works without too many side effects.
“The voices are still awful when they are really loud. They discuss me, put me down, shout obscenities, comment on what is happening to me and tell me to do things that put me in danger,” wrote the patient. “I often end up seeing the world in a very different and frightening way and at the time I’m having these delusions I really believe them. I can still get very distressed by it all but these days living with schizophrenia is easier than it was when I was first ill.”
Doctors treating patients usually aim to help them break what many people with schizophrenia experience: cycles of episode-hospitalization-discharge-relapse. The goal is to smooth out these experiences and to this end, medication has been found to be most helpful. Doctors also recommend support groups, which help patients to identify the stressful situations that may bring on an episode. Other suggestions include exercise, proper eating, avoiding alcohol and recreational drugs, and keeping a record of personal experiences in order to better understand the disorder and its unique expression and impact. Like every illness, schizophrenia is as individual as those who receive the diagnosis. It is only with support and effort that patients find the unique best way of managing their own care.
Elyn Saks is one example of a patient who has overcome the challenges of her illness. A professor of law, psychology and psychiatry, she was diagnosed at age 21 and today speaks movingly of her condition. Watch her give a TED talk in which she discusses her condition and the difficulty in overcoming mental health stigma: