It’s 10:30PM on July 4. I’m in my bedroom in our condo in Capitola, listening to the seemingly never-ending booming sounds of fireworks echoing into the night. Will it EVER stop? I think to myself. I am not a fireworks person, and I am definitely not a night person. I’m mildly reassured by the fact that I’m not being kept awake by fireworks and by 110 degree heat (which was the temperature reading that day in Sacramento. Capitola, in contrast, hit a high of about 72 degrees.). Finally the fireworks start to die down, and I settle down into bed, ready for sleep.
Then, a few minutes later, I hear this:
“HELP!!! SOMEBODY HELP ME!!!”
My ears perk up. What the hell is going on?
There’s a bang! bang! bang! at our front door. “SOMEBODY HELP ME!!!” And then, the words you never want to hear in the middle of the night, especially on the Fourth of July: “FIRE!!! FIRE!!!”
There was, as it turns out, no fire. No medical emergency. No crime-in-progress. The person who was running around screaming outside was our neighbor, who has a diagnosis of schizophrenia, paranoid type. Her behavior, apparently, has led to several run-ins with the police (including this time). And, as a result of these ongoing incidents, she’s facing the possibility of eviction – and, if she can’t find a suitable housing situation, possible homelessness.
Schizophrenia is a common – and debilitating – mental illness. Worldwide, about 1% of the population suffers from this condition. Symptoms include hallucinations, bizarre delusions, disorganized and fragmented thinking, strange and inappropriate behaviors, and negative symptoms, which involve the absence of behaviors that should be present. Negative symptoms include things like depression, severe apathy and lack of motivation, flattened emotions, and social withdrawal. These symptoms, given their chronicity and severity, have reverberating social consequences. According to a study conducted through the Johns Hopkins University/Bloomberg School of Public Health, between 73-90% of people with schizophrenia are unemployed. About one-third of the homeless population in the U.S. (and one-fifth of those in prison) suffers from schizophrenia or bipolar disorder. They often can’t work. They have difficulty finding a stable housing situation. They have run-ins with the law. And they often fall through the cracks of the mental health system, not getting the treatment they need.
The one ray of hope? Family support. When a solid group of close family members takes charge of the person’s treatment and care, outcomes improve immeasurably. Family caregivers take on a tremendous amount of responsibility. They try to get the person to take medication consistently. They track their finances. They help them find a suitable job. They may arrange and monitor their housing situation. They act as a liaison with case managers and other treatment providers. They defuse situations that could escalate into police involvement. They help to determine when a stay in the hospital is appropriate.
Family support. The phrase sounds so innocuous, but the charge is daunting. Family caregivers commonly neglect their own self-care. They get burned out, causing their emotional support for the person with schizophrenia to wane. In some cases, the burnout is so strong that family members bail out altogether. And, of course, there are situations where there never was any family support to begin with. Sadly, many of us in the LGBTQ community know that scenario all too well.
No one has ever done a large-scale, comprehensive study of people in the LGBTQ community who suffer from schizophrenia. In fact, the handful of studies I came across are single-subject case studies, describing one person’s experience. All of those studies came out of the LGBT Affirmative Program, which is part of the Heights Hill Mental Health Service of the South Beach Psychiatric Center in Brooklyn, New York. This program, the only one that specifically addresses the intersections between severe mental illness and LGBTQ identity, recognizes a number of key points:
- Many LGBTQ people with mental illness may not feel safe coming out to providers. In fact, they may feel as if they have to put up with heterosexist and cisgendered assumptions as a trade-off for receiving psychiatric services.
- Because schizophrenia is most likely to strike during adolescence or early adulthood, for many LGBTQ people with mental illness, their first psychotic break may have coincided with their initial coming-out experience and LGBTQ identity development process. This is likely to have a major impact on their relationships, socialization, internalized homophobia, and self-esteem.
- In LGBTQ people with mental illness, symptoms of chronic depression, emotional flatness, guardedness, social isolation, anxiety, and suspiciousness could be misdiagnosed by providers as signs of schizophrenia, when in fact they actually represent the aftereffects of internalized homophobia, marginalization, and oppression.
- For LGBTQ individuals who lack family support, the outcomes tend not to be very promising. People who are ostracized from their families are more likely to delay seeking care, and they are more likely to stop taking medications and drop out of treatment.
From the very onset of mental illness, the quality of support within the family can make or break a person’s experience – particularly if we’re talking about an LGBTQ person. It’s common for a person’s first psychotic break to occur in response to a stressful event – and getting cut off from your family because of your sexual or gender identity certainly qualifies as a stressful event. Once a person receives a diagnosis and is expected to follow some sort of complicated treatment plan, they’re going to have a lot of trouble complying on their own without family support. The “chosen families” that Kath Weston waxed bucolic about in her 1991 book Families We Choose might be willing to celebrate major holidays together and share childcare responsibilities, but they’re probably less likely to continually run interference for a person with schizophrenia. In fact, just as many LGBTQ people with mental illness fear coming out to their health care providers, it’s also common for them to fear coming out as having schizophrenia to the LGBTQ community. The dual (perhaps multiple, depending on other identity statuses) marginalization that results from being queer and from having a mental illness ends up feeding off one another, making for a more depressing prognosis.
Once my neighbor settled down, I went outside to speak with the police officers who handled the situation. “She’s moving soon anyway,” one of the officers said to me. “Then she won’t be a problem anymore.”
“So we’re passing the buck?” I retorted. “If she moves, she might not be my problem, but she’ll become somebody else’s problem. And it’ll continue until someone steps in and gets her the help she needs.”
“You’re right,” said the officer. And that’s how it is for many people with severe mental illness. Unless a collective of family members steps in.