As someone who does a great deal of work in community and activist spaces, I have made a significant effort, in recent months, to address the topic of mental illness in our communities. Many of the spaces I work in address state violence – an issue closely tied to our treatment of mentally ill people – but in truth, discussion of mental illness is lacking in most spaces where community building and culture building are actively discussed.
I usually begin conversations about mental health by “coming out” with the fact that I live with bipolar disorder and explaining why I am disclosing that information. During personal introductions, and in some dialogues, I explain that I am disclosing my medical condition because I think it’s important to push back against the stigma attached to mental illness. I note that those present shouldn’t concern themselves with my condition any more than they would concern themselves with the condition of a fellow organizer who managed their diabetes with insulin – meaning that short of an apparent medical crisis in progress, there is no need to question how my mental health might affect my work or community interactions, or attempt to intervene in my activities.
Despite the progressive, or at least aspirationally progressive nature of these spaces, I know that some of the people who hear these words are surely passing judgment. While discussion of depression, as both a long-term illness and an acute experience, has become more mainstream, acknowledging a condition like bipolar disorder remains fairly taboo. Thanks to social and media stereotypes, the words themselves conjure images of out-of-control behavior, hypersexuality and violent outbursts. While erratic and self-destructive behavior are potential symptoms of bipolar disorder, the extremes that people tend to associate with the condition are hardly the norm, and like many ongoing illnesses, bipolar disorder is highly treatable.
Most of us know and work with people living with bipolar disorder, or some other highly stigmatized condition, whether we know it or not. This level of proximity could allow us all to be part of a network of care and assistance. But as a society, we have remained more concerned with stereotypes and critiquing the behavior of others than we are with providing care to those affected.
We had been placed in a holding tank – a place where the rest of the world didn’t need to be troubled by our behavior.
Bipolar disorder is just one of many conditions that are regarded with suspicion or even scorn within our communities. People with schizophrenia, post-traumatic stress disorder and other potentially debilitating conditions also experience shame and embarrassment as a result of social stigmatization. Out of embarrassment, or a fear of discrimination, many remain silent about their conditions. From the active professional whose condition is undetectable to their coworkers to the houseless woman in desperate need of support services, remaining silent can be a matter of both pride and fear. In workplaces, mentally ill people are left to wonder if they will be trusted, or if our ideas will be taken seriously if a potentially discrediting label is attached to our identities. If we are in the throes of an untreated or uncontrolled illness, and manifesting self-destructive symptoms, we may even fear being stripped of our liberty due to criminalization or forced hospitalization.
Having been confined at a state facility years ago, after admitting to suicidal thoughts, I can state with certainty that commonly held fears of being forced into environments that compromise our dignity, and even inflame our conditions, are not wholly unfounded. This is particularly and predictably true when adequate health insurance is lacking.
Having been hospitalized in some of the best facilities available, and in a state psychiatric ward, I can vouch for the fact that, in some cases, medical insurance is the difference between feeling cared for and simply feeling incarcerated. At one point, years ago, during my stay in a state mental hospital, I was actually attacked by my roommate, who imagined I was making noises that were keeping her awake. She thought I was mocking her, and became enraged. After hours of scolding me for offenses that I wasn’t actually committing, she attempted to strangle me. I fought her off, screaming for help, and watched as she was carried away and sedated.
I never blamed her. In truth, I was devastated by the sight of what was happening to her. Her confusion and panic as she was carried from the room, the violence of her being strapped to a hospital bed, and the administration of a drug that was only meant to quiet, rather than heal her – the whole scene was a tragic encapsulation of how society had failed her. I knew that, like me, she was trapped in a place where she was promised help, and had received no real assistance.
We had been placed in a holding tank – a place where the rest of the world didn’t need to be troubled by our behavior.
The staff themselves seemed to realize as much, treating us as inmates rather than patients, and themselves as prison guards rather than care providers. They may have once hoped to make a difference, but seemed to have since lost any illusions about having the resources to do so. Like police who see themselves as garbage collectors, these clinicians seemed to view themselves as containment professionals. During my stay, one psychiatrist actually told me, “You need to get serious about doing what you need to do to get out of here, and stay out of here, because seriously, this place is a hellhole, and you don’t want to come back.”
I relay all of this because I want people to understand that I am actually one of the lucky ones. I made it through the dark period of my life when being undiagnosed and inadequately treated led to constant thoughts of suicide, self-destructive behavior and outright disability. When I finally acquired medical insurance, my life was transformed by the ongoing process of care I received. I found a caring and insightful psychiatrist who quite literally saved my life. No longer one of the walking wounded, I could function and even experience sustained happiness. My symptoms were not gone, but like many people living with a chronic illness, I was able to maintain a level of functionality that made a meaningful day-to-day routine possible. It was like being released from a cold, dark cage.
It was the beginning of a journey that many are never allowed to embark on, and despite my gratitude, the realization that so many people like me remained locked in literal and figurative cages weighed heavily upon me.
Letting go of my fear of sharing that truth is one of the most important things I have ever done for myself, and for others.
I did what I could to advocate for mentally ill people. I fought to keep our city’s publicly funded mental health clinics open. I tried to offer loving assistance to people in my community who expressed a need for support or care. I searched out available resources for those in need, and at times, privately shared my experiences with mental illness, addiction and both good and bad treatment. But publicly, I remained terrified of discussing my illness. When I would open up to larger audiences, I would usually characterize my struggle as being purely depressive in nature. This never felt wholly dishonest, as depression has always been the most extreme symptom of my illness, but it wasn’t the whole story. And while acknowledging depression can be a very brave act for some people, for me, it wasn’t truly liberating. I was still keeping a large part of what I’d experienced – what had made me who I am – in the shadows, mostly because I was afraid of being denied opportunities or being written off as “crazy” by those who disagreed with my ideas or perspectives.
Eventually, I felt secure enough in my work and my relationships to open up more about my condition. There are still a number of stories I have never told, and may never tell, but the reality of my life is out there now, and I think letting go of my fear of sharing that truth is one of the most important things I have ever done for myself, and for others.
At the start of 2015, I wrote a piece about my experience with bipolar disorder and addiction, and vowed to push forward dialogues about destigmatization and access to care. Since then, I have lost track of the number of people who have thanked me for going public and continuing to speak to the issue. Some of those thank-yous have been public, but most have been both quiet and private. In the past few months, those reaching out have tended to be young women and non-binary individuals who are grateful to see someone pushing these conversations, but who are still too worried about their careers, movement work and futures to discuss their own struggles publicly. Some of these people are not getting the care they need. Most could use more community support. But because of our failure, as a society, and because of the failures of our communities, they do not feel safe speaking out.
When I think about the spaces we could create, the networks of support we could build and the change we could fight for collectively if we all felt free to speak, my heart is heavier than I can say. I know exactly where these young people are at. It’s lonely and frightening and, most tragically, it is wholly unnecessary.
I don’t blame them at all for their silence. We have not built a world that welcomes their honesty. We have, in fact, made a world where treatable psychiatric conditions frequently become terminal struggles – where self-medication, self-harm and suicide destroy lives that could be saved with medical care and community support. We have left our friends, neighbors and family members to face these daunting possibilities in silence, often without any measure of the help they need to simply get out of bed on their worst days. We treat symptoms of their illnesses as character failings and indulge stereotypes that diminish their worth as individuals. In short, we fail those who need us most, both in their daily lives and in their darkest hours.
For those of us who are in a position to tell the truth of our lives, I believe it’s time.
There is no singular solution to this crisis of culture and care, but there is one thing that many of us can do to push for a necessary change in how we love and support mentally ill people. While I would never push vulnerable young people to take any action that might compromise their safety or well-being, some of us are in a position to speak out. As I previously mentioned, I myself waited until I felt secure in both my work, and my friendships, to go public with my condition. I therefore understand the predicament of those who feel they have far too much to lose by opening up. But I also know that there are many people out there like me, who can afford to tell their stories. It may still be a risk. There are people who will judge us. I sometimes see it in their eyes as they hear the culturally loaded word “bipolar,” but in my own experience, those scattered moments are more than outweighed by the gratitude I hear from people who have suffered in silence. They are longing for a world where they can tell the truth of their lives, and we can help them get there.
I’m not downplaying the severity of what it means to “come out” about our conditions in this society. Whether you take medication for depression or live with an illness like schizophrenia, your concerns about opening up are wholly valid. But I believe that it is a necessary step, and one that I hope more and more people feel secure enough to make. This dialogue has the potential to help those who might have suffered in silence to reach out for help. At the very least, it has the potential to assure those people that they are not alone, and that the stereotypes society presents are not the only faces of their struggle. So for those of us who are in a position to tell the truth of our lives, I believe it’s time, and that we can change a great deal by doing so.
For those who do not live with mental illness, I have a much simpler ask: Welcome these stories with love and understanding. Show those who are afraid to speak that compassion and support, rather than judgment and scorn, await them on the other side. Show them that there are safe harbors in this world, and that they don’t have to make their journey alone. Help build the kind of communities where people care for each other, rather than simply characterize one another. Make it clear that you expect yourself and your community to overcome the prejudices that have colored our collective consciousness for so long. Recognize the courage it takes for those whose careers and social standing might be compromised by their willingness to tell their stories, and encourage and support them. Make clear that there is no shame in any illness, and that you pass no judgment on them or their symptoms. Practice patience and understanding.
We can do better. And for the sake of those whose lives will change for the better if we do, and in the name of everyone we’ve needlessly lost to suicide, active addiction and the prison system, we have a duty to try. So let’s talk.