Where Were They When It Mattered Most?

by anonymous NSSC member

As a caregiver to a loved one with a severe mental illness—what many now call a serious brain disorder—I’ve learned far too much the hard way. I’ve learned how terrifying untreated psychosis can be. I’ve learned how it isolates entire families, how it breaks down trust, how it creates accusations so outlandish they silence you with shame. And I’ve learned something I never should have had to—that the organizations claiming to help families like mine often aren’t there when we need them most.

Where were these mental health alliances when my child accused me of horrific things that never happened? Where were these organizations when my family was torn apart by delusions, when we sat in silence, too ashamed to speak the truth? Where were any of these mental health nonprofits when I had to lock my bedroom door at night out of fear—not from violence, but from the unpredictability of someone I loved deeply?

No one from these organizations told me what psychosis really is. No one taught me about anosognosia—a neurological symptom where a person cannot recognize they’re ill, no matter how obvious it may seem to others. It affects an estimated 50–60% of people with schizophrenia and related disorders. Not willful denial. Not “noncompliance.” A symptom. But we were never taught that.

Instead, we were told to accept what is. Told to “let them hit rock bottom,” as if jail or homelessness were legitimate forms of care. Instead of getting support, I was handed silence. And when things escalated—when the police were called, when my loved one ended up in the criminal justice system—I was told there was nothing anyone could do.
And yet, when I heard mental health groups rush to condemn the recent Executive Order aimed at addressing homelessness and public safety, I couldn’t help but wonder: 

Where were you when we were desperate for help?

Where were you when my family member was in crisis? Then arrested?

They said, “Mental illness is not a crime.” Of course it’s not. But when someone is in extreme psychosis, and our laws prevent timely intervention, and our systems require a person to be dangerous before receiving care—then yes, the result is often criminalization. Our loved ones are arrested for symptoms. For trying to survive in a world that refuses to treat their illness until it spirals out of control.

Where were these organizations when our loved ones were being criminalized long before this Executive Order? Where were they when families like mine were begging for treatment and told “there’s nothing we can do”? We’ve been navigating a fragmented system for years, completely alone. And now we are watching major advocacy groups dismiss a policy that—for all its imperfections—finally recognizes that something is terribly wrong.

I’m not saying the Executive Order is perfect. But I am saying that, for the first time in a long time, I felt hope. I hope that families like mine are being seen. That we are finally being heard. That someone in power is acknowledging what we’ve known for decades: the current system is failing the people it was designed to help.

Meanwhile, those who say they advocate for people with mental illness seem more focused on slogans than solutions. And in doing so, they’ve left behind the families who’ve lived this crisis day after day, year after year.

We don’t need more platitudes. We need organizations willing to face the hard truths of severe mental illness, to stop pretending all mental health challenges can be addressed with awareness campaigns and peer support alone. We need advocacy that includes us—the caregivers, the families, the ones who’ve been screaming into the void.

So I ask again: Where were these organizations when it mattered? And more importantly—where are they now?

Because we are still here. Still trying. Still hoping. And we will no longer accept being invisible. Discounted. Sidelined..

The division we’re seeing among advocacy groups in response to the recent Executive Order is deeply disheartening. Ultimately, it's not helpful to the people who need our advocacy the most: those living with severe mental illness who are suffering on the streets, caught in the criminal justice system, or tragically, no longer with us. When we let ideology or rigid positions stand in the way of nuanced, evidence-based solutions, we risk turning our backs on the very individuals our work is meant to support.

Instead of drawing lines in the sand, we need to focus on areas of agreement and shared purpose. Everyone deserves access to compassionate, effective care—and for some, that care may need to begin with involuntary intervention when a person is too ill to recognize their own need for help. That reality shouldn’t divide us; it should challenge us to build systems of care that are ethical, well-resourced, and centered on dignity. We must come together and advocate for reforms that reduce suffering, improve outcomes, and leave no one behind—not even the sickest among us.