Together We Rise
We all benefit from reducing mental health stigma.
Posted Apr 12, 2018
Recently I was invited to Loyola University of Chicago to give the keynote address at their 2018 Wellness Summit. I was honored by the opportunity, and I wanted to share my remarks on intersectionality and mental health, especially as it relates to college students.
When I first went to find Jacqueline in the waiting room she was trying very hard to hide. She was wearing large Jackie O-style sunglasses, and the frayed hood of her hoodie was cinched tightly around her face despite the fact that it was summer. Her head was tilted downward, her eyes focused tightly on a spot about six inches in front of her toes. Her mental health assessment noted that she was a transgender woman but the intake worker did not ask her her preferred name. Like a football coach I called out her last name and asked her to follow me back to my office.
I like to keep the lights low when I’m in session. It’s more comfortable for me to work that way and I find that it helps my patients relax as well. I noticed that Jacqueline continued to keep her sunglasses on her face even though she could barely see a thing. Jacqueline began by sharing a story from her traumatic past. She was on vacation in her native Brazil visiting her family and at that time was living as a gay man. She went to a local bar, had a little too much to drink. She met someone and decided to go home with him. He offered to drive her back to his place, and since she had walked to the club she accepted. Due to the lingering effects of the alcohol, the blindness of lust, or both, she didn’t pay attention to where he was going. She noticed when he stopped in the middle of the field, reached behind him, and pulled out a machete. Her senses sharpened, she wrenched open the door and began running for her life. She ran through fields and forest for an hour and a half until dawn when a stranger let her use their phone.
Jacqueline believed that that was when it started. Since then she had been locked in a depressive spiral. She had been in a series of unsuccessful relationships, most of them inflicting new horrors upon her body, whether physical, emotional, or both. She began to cut herself and engage in other forms of self-harm. She became volatile, prone to fits of rage that she would recount in our sessions, embarrassed and incredulous that she could act in such a manner. She had been in various forms of mental health treatment since then, but her therapists had been unremarkable, if not harmful. Her most recent therapist believed that her being transgender was a symptom of her mental illness. She could have left that clinic, and eventually she did, but few places took her insurance, and those that did had a habit of closing down. She had lost count of the number of times she had been hospitalized, either for thinking of killing herself or for attempting to do so.
It’s easy to look at a patient like Jacqueline and give a diagnosis. She had already had several of them. Borderline personality disorder, major depression, major depression with psychotic features, posttraumatic stress disorder, panic disorder, generalized anxiety disorder, bipolar disorder, gender dysphoria. Something that’s always nagged me about Jacqueline’s case, and so many like hers, is that assigning a diagnosis is often like finding someone that’s been shot lying on the sidewalk, rushing them to the ER, restoring them to a sort of health, and sending them on their way without ever bothering to ask who shot them, why, and if they’re still at risk of harm. Jacqueline felt stigmatized by American society for being Latina, by Latino culture for being a member of the LGBTQ community, and by gay men for being a transgender woman. It’s easy to slap a diagnosis on her and send her on her way with some psychotropic medication, but in order to ethically treat her we must also confront the structures of society that both create and perpetuate mental suffering. I’ve worked to bring this social justice perspective to our work together. When she expressed a desire to begin her transition I was able to provide her with a referral to begin hormone treatment at a provider that took her insurance. When the president tweeted that he was banning transgender individuals from serving in the military, amongst other slights to the trans community, I affirmed her anger and her sense of injustice. Together we’ve worked to find ways she can feel safe going outside when the risk of being assaulted, even murdered, for being trans is real.
Stigma regarding mental illness works other ways as well. According to the National Institute of Mental Health, 44.7 million adults in the United States live with a mental illness, which represents almost 20% of the population. Of those 44.7 million adults, 19.2 million, or about 43%, receive treatment. Among young adults like you that figure is even lower. Only 35% of young adults between the ages of 18-24 seek mental health treatment. If this was anything but mental illness, we would call it a public health crisis. By way of comparison, 30.3 million adults have diabetes, and of that population about 7.2 million, or roughly 24%, are undiagnosed. Now think about all of the ads you’ve seen encouraging people to get tested for diabetes, to change their lifestyles to reduce their risk of developing diabetes, the numerous campaigns to raise awareness of the seriousness of diabetes. And diabetes is serious to be sure; it is the 7th leading cause of death in the United States. Suicide is not far behind, though, at number 10, yet the way in which we talk about mental illness is vastly different than most other medical conditions.
Throughout history we have mostly used the term ‘mental illness’ to denote those who are different than us. We’ve even thought there must be something morally suspect about someone experiencing mental distress. While we can trace diabetes to previous lifestyle choices, at least in some people, that diagnosis doesn’t seem to carry the weight that ‘depression’ or, even worse, ‘bipolar disorder’ or ‘schizophrenia’ do. And I must admit that a good chunk of the blame lies with mental health practitioners like myself. We often haven’t been fair in the ways we talk about and treat our clients. But I’m here tonight, and you’re here with me, because we all want to do better, so I want to start by talking about what breaking down stigma means for you as college students, look at how it has impacted my work in community mental health, and give you some idea as to the direction I think we should be heading.
College is a stressful time. When I enrolled at the University of Illinois at Urbana-Champaign for my undergraduate degree, the annual tuition for Illinois residents was $6,460 a year. The in-state tuition rate now is $12,036. I’m proud of the education I got there, but I doubt that it’s twice as good as it was in 2004. Now, before you feel too jealous, I enrolled at the University of Chicago for my master’s degree in social work, so I’m in this student loan debt mess with you. Aside from the money, you also have to juggle your classwork and your social activities, not to mention the whole “what am I going to do with my life” thing. That’s a lot. It’s fine if that stresses you out, just thinking about it makes me feel stressed. Stress is just the body’s response to feeling overwhelmed.
I wish that I could somehow wave a wand and dispel some of that stress for you, but we haven’t invented that yet. I can encourage you, though, to seek out your student mental health services when you’re feeling overwhelmed. I didn’t when I was an undergraduate, and I wish that I had. I didn’t make that same mistake when I went to graduate school, and my experience there was much better for it. I can anticipate what some of you are thinking because it’s probably the same sort of things I used to think too. Seeking mental health treatment is not just for those who are hearing voices or thinking about dying by suicide. If you had a tooth that was bothering you you probably wouldn’t just sit around and wait until it stopped hurting. You would call a dentist and schedule an appointment. Take care of your mind just like you would your teeth. You have nothing to lose by making an appointment. I also suspect that some of you think, I don’t want to waste anyone’s time and I’m sure that the therapists have more severe cases to get to. I’ve had cavities filled, and I’ve also had a root canal. Both of them were necessary, but I can tell you that the root canal took a lot longer and was a lot more painful. Studies have shown that the earlier we intervene when someone is experiencing mental illness the better the outcome will be. Aside from that, though, I firmly believe that no one should have to suffer needlessly. So don’t wait.
Breaking down stigma also means working to break down the barriers that perpetuate oppression. Jacqueline may have not heard the word ‘intersectionality,’ but she lives it every day. No concern, no identity, exists on an island of its own. Creating a more just society with better care for those with mental illness also means addressing the root causes of trauma and suffering including gun violence, police brutality, and the lack of development in communities of color. We know that exercise and sunshine are great ways to lift someone’s spirits, but I now think before I recommend it to my patients since one of them told me that she had seen the same drug dealer shot three times outside of her apartment and if I thought she was going to willingly walk around her neighborhood I should think again. If I wanted to see a psychiatrist, I could in all likelihood have an appointment with someone who took my insurance by the end of next week. Right now a new patient at my clinic would probably have to wait around 6 weeks to see someone, which is an improvement over what it’s been in the recent past when it took 3-4 months. In mental health, as in so many other areas, being poor can make you miserable, if it doesn’t kill you first.
There are larger developments that give me hope, though. I know there’s a stereotype that those who work in community mental health quickly become burnt out and angry, but I really haven’t found that to be true. It’s almost never the patients who make me feel beat-up and worn out but rather the injustice that beats down upon my patients every day, just like I mentioned with Jacqueline. And while it’s true that the poor like Jacqueline bear the brunt of our society’s disregard for those with mental illness, it impacts all of us. As my talk draws to a close I want to share a few things happening now that make me hopeful.
Colleagues of mine at the Chicago Center for Psychoanalysis, or CCP, founded the Psychotherapy Action Network a few years ago to combat the growing marginalization of therapy services. For too long insurance companies have been able to have the last word. They require a diagnosable mental illness to offer treatment, and those same diagnoses available in the DSM are often overly influenced by the pharmaceutical industry which creates drugs to cure those same diagnoses. Insurance companies love this because it’s much easier for them to pay for a few yearly sessions with a psychiatrist rather than the long-term work that therapy often requires, and if therapy is allowed it’s usually for an allotted number of sessions for a manualized treatment (here’s 12 sessions, in session one address x, session two focuses on y, etc.). But human problems and suffering do not fit easily into such manuals, and they don’t always respond well to drugs either. Insurance companies continue to post record profits while the people they are supposed to serve--us--continue to suffer. The Psychotherapy Action Network is still in its infancy, but it is working on advocating for more humane and effective treatments that do not focus on the bottom line but rather seek to enhance human flourishing.
As I recounted earlier in Belt Magazine, some of those same colleagues from CCP have been advocating for robust community mental health services for years, and in 2011 their efforts paid off when the state passed a law allowing neighborhoods to voluntarily raise their property taxes in order to fund community clinic. Chicago has one such clinic already, The Kedzie Center, and another one is on the way on the West Side. These clinics bill insurance if clients have it, but if they don’t that’s not a problem because they are funded by and for the community. Because they are not solely reliant upon insurance they can offer time-unlimited treatment, and this also lets them innovate since their funding is secure. Our mayor may have a (D) behind his name, but he has made it clear time and again that he could care less about the lives of the poor and vulnerable in our city, whether that’s by shuttering community mental health centers, closing schools in predominantly black and brown neighborhoods, or allowing the police to murder and terrorize Black men and women virtually unchecked and then suppressing the evidence of their crimes for as long as possible. I love this city, and I dream that one day we will again prioritize the hard work of community mental health, but we can’t bet on that. Instead I think that communities have to band together to advocate for what they need, and the response has been overwhelmingly positive. If we want to address Chicago’s violence problem, we don’t need more police or more guns. They’re a part of the problem, not part of the solution. Instead we need to inject new life into communities, new hope, and having easy access to free mental health services plays a key role in that.
Finally, the stigma around mental illness which I mentioned earlier is being steadily chipped away by brave men and women, even if it has not gone away completely. Kevin Love had a panic attack during a basketball game and wrote about his struggles with anxiety. Phil Elverum, who records under the name Mount Eerie, released two albums recently that plumbed the depths of his grief and depression following the death of his wife. Demi Lovato has been wildly successful in the pop arena while also being open about her bipolar disorder and history of self-harm. Since the time that I first wrote this, the writer Junot Diaz wrote a New Yorker article on his experience of childhood sexual trauma and Mariah Carey disclosed her Bipolar II diagnosis just this morning. Things really are changing.
Mental illness is not something to be ashamed of. It is not a personal failure or a sign of weakness. Whether through our own experiences or the lives of our loved ones, from the South Side of Chicago to the Loyola campus, it impacts us all. We all have work to do, whether its getting treatment for ourselves when we know we need it, encouraging those we love to do the same, voting for politicians who work to represent everyone, or simply working to remove words like ‘crazy’ and ‘insane’ from our vocabulary. I’m excited as I look out upon this crowd and see your passion, and I look forward to having many of you as colleagues soon. The temptation of hopelessness is always before us, so I’d like to end by quoting one of my heroes Dorothy Day. “People say, what is the sense of our small effort? They cannot see that we must lay one brick at a time, take one step at a time. A pebble cast into a pond causes ripples that spread in all directions. Each one of our thoughts, words and deeds is like that. No one has a right to sit down and feel hopeless. There is too much work to do.”