Twenty Years after a 1996 Mental Health Climate Study: A Conversation with Bernice A. Pescosolido

In which we discuss mental health, stigma, substance abuse,  the importance of connections, and our generation as the world’s future leaders.

I’m nineteen years old and I am an alcoholic.

It feels strange calling myself that. (An alcoholic, that is, not a nineteen-year-old.) I’ve only started calling myself an alcoholic in the past few weeks, although I’ve known the fact for at least several months now.

In the past, I presented my problem under different names: a “substance use disorder” (because everyone knows you can’t control whether or not you have a disorder), a “bad blackout” (because this is the only time it ever happened, right?), “maybe an allergy to alcohol” (because I was feigning stupidity), and “just not drinking for a little while” (because nobody likes the girl who can’t go out and have fun).

My experiences are not unique. Many of the things that gave (and still give) me the courage to “come out” as an alcoholic are the dozens of readings I’ve done on the topic, including, but not limited to, Sarah Hepola’s Blackout, David Sheff’s “My Addicted Son,” and Dwaine Casmey’s Roller Coaster Hill. Reading these works reminded me that the feeling of addiction is so fleeting and scary and not exclusive to my life.

My experiences are not dramatic. I’m what specialists call a ‘functioning alcoholic,’ meaning that I can exist normally and show up to every class and get good grades and sustain relationships. But, like any other mental health problem, my alcoholism is something that’s always with me, and it is something that is entirely out of my control.

I never woke up in the hospital or got arrested or hurt someone else. My alcoholism was not really publicly known, so nobody around me felt that they had to watch out for the warning signs. I’m in college, so blackouts are talked about like rewards, indicative of a good night. I never thought I was an alcoholic because the people around me affirmed that, “Yes, I have been there too.”

Simply choosing to not drink could not prevent my experiences, because I didn’t have the ability to choose not to drink. That’s not how addiction works. Once I started drinking, I couldn’t ever not drink. I’ve had my girlfriend pry a bottle of wine out of my hand. I’ve had my friends sit me down the next day and tell me all of the mean things I said – both about them and about myself. I’ve woken up with a hangover and decided the only cure is more alcohol. I’ve repressed and suppressed and torn myself apart with liquor.

My alcoholism is not a new story. But it’s one that I think is necessary for others to hear, especially those who know me.

The stigma behind it has, for so long, prevented me from telling this story, out of fear for myself, of how others would see me, and about how my life would change after admitting my problem. But, here I am, stepping beyond stigma to share my story, in hopes that it will help someone better understand (my) alcoholism, or even make sense of their own.

BernicePescosolido
via Indiana University Bloomington 

I talked with Dr. Bernice A. Pescosolido about mental health and the stigma surrounding it, twenty years after her 1996 document, “Americans’ Views of Mental Health and Illness at Century’s End: Community and Change.”

She chatted with me on the phone for half an hour about both the issues she’s studied and my own personal problems (thanks, Doc), and helped me to better understand mental health in America and the way that we – average people – respond to it and deal with it. And even though she was talking to me from hundreds of miles away, she made me feel safe and informed and inquisitive. And she provided me with so many resources (which you can find at the end of this post) that, on good and bad days, will help me get through it all.


 

Morgan Vickers: Why did you want to study mental illness and the stigma surrounding it?

Bernice A. Pescosolido: Well, I actually never wanted to study stigma. My interest was in trying to understand what pathways people travel, from the community, to cope with the onset of health problems, whether they were physical problems or mental health problems. I wanted to do this because I was impressed by the elegance of, but frustrated by the simplicity of the available models of the time. [They] were basically these rational-choice models where people experienced something and they weighed the costs and benefits of various factors, like insurance and their time and whether or not they knew anybody.

While that was clean and simple and elegant, it didn’t resonate with me at all. It didn’t resonate with how I made choices and how a lot of people I knew made choices. So, I developed an alternative model called the Network Episode Model, which doesn’t look at a decision; it looks at the whole course of recognizing and responding to the onset of illness. It really focused on consultation with others – meaning your friends, relatives, people you know for one reason or another – and the advice that they gave you. It’s a much messier idea, but it struck me as more realistic.

In working on that, I was able to show that there are different pathways to care and that while some do match the, sort of, dominant rational choice model, a lot of them didn’t, particularly in the area of mental illness. Our studies show that about 25% of people are coerced into care. And another third told stories about how they got to care that didn’t match any model. So, we were able to establish that there is this networked process that underlies the ways in which people travel pathways to care, and [we] sort of, thought about how networks can either push you to care or away from care, depending upon the advice that you get.

I decided that one of the interesting things to look at would be stigma. So, I went to the literature and I was shocked to find that while stigma was a classic concept – it’s been around since Ancient Greece, but has really been heavily, scientifically studied since about the 1950’s or 60’s – that there hasn’t been any contemporary studies. And I called an expert in this area, one of the people who was still doing research on stigma – Bruce Link at Columbia – and I said, ‘Am I missing something? Am I reading this right?’ And he said, ‘Yeah, there as not been any, particularly national studies, since the 1950’s.’ And so, I just said to him, ‘We need to do something about that.’

And that’s how it happened. I really just fell into it as part of wanting to understand how people get to care, and then discovering we didn’t know much about what stigma looked like in contemporary America.

MV: As someone who is almost twenty, I’ve grown up in a time where stigma has been talked about to some extent.

BAP: Yeah.

MV: You’ve been studying this since around 1996 when you helped produce the document, “Americans’ Views of Mental Health and Illness at Century’s End: Community and Change.” So, since then, have you seen a significant change, or any change, in the way mental health is treated in terms of stigma?

BAP: Well, we’ve done research that showed – so this is in the American Journal of Psychiatry in 2010 – one aspect of what you might call stigma. People theorize that the underlying cause of stigma is misinformation – the idea that mental illness is caused by bad character, bad parenting, or all of these things. That has really changed. You ask Americans, ‘In general, what do you think causes mental illness?’ – well, you don’t say ‘mental illness;’ you give them a scenario that they would confront in the community, someone with certain kinds of symptoms that would represent depression or schizophrenia. And then you ask them, ‘What could be the cause of this?’

[Americans] pretty much know and pretty much understand the power of genetics and the power of chemical imbalance and that it has something to do with the brain. But in terms of getting down to business with regard to prejudice, we were able to show that there hasn’t been any change in the willingness to include people in their lives. And that was kind of an important message – more important than I realized at the time – because since the 1950’s, people had been arguing in mental health, ‘If we could just convince Americans that mental health is a disease like anything else, then their stigma will go away.’

Well, we have convinced them and psychiatry has convinced them and informational campaigns have convinced them. They get it. They get that it’s a disease. But, it hasn’t really altered the rejection levels, which really is the heart of stigma; it’s the prejudice and discrimination. So, we’ve taken care of misinformation, but it didn’t have the effect that people thought it was going to have on issues of acceptance and inclusion.

MV: At UNC, one of the things we’re having issues with is that so many people now are using the mental health services – Counseling and Psychological Services (CAPS)

BAP: Yeah, exactly. It’s the same thing. It’s called that here too.

MV: But recently, there was an article in The Daily Tar Heel that said that CAPS is at or over capacity at many points in time. I’ve personally gone to CAPS and I’ve also sought outside treatment in the Chapel Hill area, and I’ve been put on several wait lists for counseling before.

BAP: Absolutely.

MV: I know in your TED Talk, you talk about how we don’t we don’t have enough mental health practitioners in this country to serve all of those who need help.

 BAP: That’s right.

MV: So do you think we are at capacity because there aren’t enough people to serve those in need, or because people are becoming more aware of the resources and reducing the stigma?

BAP: I don’t think we’ve ever had enough mental health services. And this is a reflection of stigma itself, in that the money that goes for treatment to mental illness is not anywhere near at par to the amount of money that goes for treatment – or research, for that matter – for cancer or heart disease. And yet, depression is right up there in terms of being one of the biggest global burdens of disease. And so, this reflects the stigma that people have about mental illness.

It also intrudes into physicians’ choices for specialties. I’ve known students who have told me that they wanted to be a child psychiatrist, but people would tell them, ‘You don’t want to do that. That’s not really medicine. That has low prestige. Nobody listens to them.’ So, the whole issue of stigma pervades not only the lives of people who have mental health problems, but also the lives of their families and friends, and of researchers and people who want to help. There just aren’t enough resources going into mental health compared with physical health.

MV: In the study in 1996, one thing that was fascinating to me was the fact that alcohol disorders and drug disorders were seen as being more stigmatized than things like major depression and schizophrenia.

BAP: Right.

MV: So, I talked about before how I have been to CAPS in the past, and that partially has been related to things like anxiety and depression, but I also have a substance abuse problem. And in terms of the stigma that we are talking about, I’ve found that the people in my life are more comfortable with me coming to them and saying, ‘I feel anxious today,’ or ‘I have depression,’ but many people I know don’t really know what to do when it comes to someone in their life having a substance abuse problem, especially for those of us at this college age. 

I believe that there have been enormous efforts made to destigmatize mental health in general. But do you think the same has occurred with diseases like addiction or substance abuse.

BAP: Well, I think if you look at the study, [substance abuse] has the flavor of ‘controllability.’ People with a disease like any other mentality, people understand that people don’t control whether or not they have a mental illness. But, with issues of substance abuse and alcohol abuse – and I would agree with eating disorders as well – I think that the public thinks that [people dealing with substance abuse] have control and that they are just not exerting that control on themselves. So, with substance abuse, people haven’t really bought into it being a disease in the same way they have with mental illness. So it’s a very interesting difference in terms of how the public has responded over time. 

MV: When I was looking up some of your research, the description to one of your discussions said, “Understanding the landscape of prejudice and discrimination attached to mental illness is fundamentally rooted in the contention that stigma can be enacted only in and through social relationships.”

BAP: That’s right.

MV: So, in response to that, how can we work to reduce stigma as individuals and as communities.

BAP: The most consistent factor that decreases stigma is contact. So, if you don’t have contact with people with mental health problems, you have a stereotypical view. But if you get to know people, or you have people in your own network that have mental health problems, then you know that – just like anything else – there are good people and bad people, and smart people and not-so-smart people, and you see the full range of humanity, and that doesn’t depend on their mental illness. That has been a very classic, but also a very promising strategy to reduce stigma.

What we’re focusing on here at Indiana University, through the College Toolbox Project, is connectedness. So, what we’re trying to do is to show how connected people already are to people with mental health problems, people they know and love. You know, [many] Americans say that they don’t want to work next to people who have mental health problems, but in fact they probably are, and they like them, but they don’t know that [their colleague] has a mental illness because people are afraid to disclose.

So, what we’re trying to do is get it out in the open that the probability of having some mental health problem in your life is 1 in 4, and that this is very common. You know people who have mental health problems. Stereotypes continue to exist because they always contain a kernel of truth. But that’s a kernel, as opposed to the entire bushel of corn, or bushel of apples, or whatever metaphor you want to use. So, we’re trying to increase connectedness, visibility, and inclusion of people with mental health problems, in addition to increasing awareness.

It’s not like we’ve totally fought the battle against misinformation and awareness, especially amongst college-aged students. I think we still have to, sort of, work on that. But your generation does seem incredibly open to talking about their issues, which is new. That’s sort of a new thing.

We have a lot of hope that if we put students in charge of this effort, that we can make campuses a stigma-free zone, and we can really have a sense of connectedness among all students, whatever their differences are, because, push comes to shove, everybody feels different about something. If you realize that there is something that makes you feel different, then you’re more open to realizing that everybody has something, and that we’re all in this together. Mental illness isn’t really different than other problems that people have, whether it’s racial prejudice or body image or sexual assault experiences. Nobody is going to get through their life scot-free. If we can realize that and work toward understating each other through connectedness, then we’re hoping that that will be lever that will reduce prejudice and discrimination.


 

Links related to alcoholism/addiction and recovery, as well as mental health:

Links recommended by Dr. Pescosolido:

Published by morganpvickers

still figuring it all out.

One thought on “Twenty Years after a 1996 Mental Health Climate Study: A Conversation with Bernice A. Pescosolido

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s