Sunday, September 07, 2014

Eliminating Stigma with Psychiatric Disorders: Is it Even Possible?


It's almost a mantra in advocacy circles: we need to get rid of the stigma associated with mental illness.  Fear of being stigmatized keeps people from seeking treatment, so it leaves people to suffer from the symptoms of these disorders.  Stigma keeps employers from hiring people with psychiatric problems. Stigma makes people not want to be friends with someone with a psychiatric disorder. Stigma is part of ignorance -- it leaves society to blame the person for their problems.  There's no stigma to having a medical illness such as hypertension or diabetes or cancer.  There should be no stigma to having a psychiatric disorder.

If you read the above paragraph and you agree with every sentence there, then please let me warn you: what follows is not going to be what people want to hear.  You may not like what I have to say.

First, I don't agree that medical illnesses don't have stigma attached to them.  I suppose it depends on what exactly "stigma" means to you -- oh, what exactly does "stigma" mean?-- but I would contend that if you have hypertension and you're not overweight, you eat a low salt diet, and you exercise regularly, then there's no stigma involved.  If you have any medical problem associated with being overweight, poor dietary habits, smoking, alcohol, drug use, or lack of exercise, then others will look upon your illnesses as being your fault.  The truth is that in our society, poor self control is stigmatized, and obesity in particular, is very stigmatized.  Fat people are the last people (even after the mentally ill) that it's okay to openly discriminate against for everything from jobs to love.  And many people think that's okay, because after all, many believe that obesity is the result of gluttony and laziness, or if not, then of poverty (oh, we stigmatize the poor as well) because they lack access to high quality food and athletic facilities. But if there's a way that society can blame you and your less-than-ideal behavior for your health problems, it will happen, and it's not all stigma-free.

One of the things we never discuss when talking about the need to reduce stigma is that psychiatric disorders sometimes lead people to behave in ways that are embarrassing or disturbing to others.  People in the throes of an acute psychotic episode have been known to go outside naked, or to react in odd and alarming ways in response to things other people don't see, here, or understand.  Sometimes ill people don't attend to their personal hygiene and they wear dirty clothes and smell badly.  Other times, psychiatric disorders can cause people to be belligerent, to act in troubling impulsive ways, or to be unreliable and to miss work. Yes, cancer makes people unreliable and they miss work as well, but I would contend that an employer who has two equal job candidates in front of him might well choose the one who won't need to miss work regularly for any type of illness.

So how do we de-stigmatize psychiatric disorders when they are associated with disturbing behavior as a direct result of the illness?  It seems it would be impossible, but I can think of one disorder where that seems not to be true: Attention Deficit Disorder comes with little stigma.  I've often wondered why this is.  ADD causes people to be inattentive, their lack of focus can be annoying, or disruptive in a classroom.  They often had difficulties with executive functioning which means they forget things, are late, and come off as being scatterbrained (how's that for a scientific term?).  They may forget they have appointments or forget to meet friends.  In schools, they get more time for exams (does real life confer that as well?), and they may get all sorts of other accommodations such as front row seats or testing in quiet rooms.  In addition, the treatment may include medications that have many side effects, including tics, agitation, insomnia, and addiction.  In college, I hear this makes people fairly popular before exams -- it's not uncommon for those who have the diagnosis to share (or sell) their stimulants with those who just want to use them to study more intently, even though giving one's controlled substances to someone else constitutes a felony. 

So here we have an illness that may make include symptoms that are often obvious, impair functioning, may infringe on the rights of others at times, include treatment with an addictive and dangerous medication, and yet ADD is not stigmatized.  Why isn't that the case for bipolar disorder or schizophrenia?  This issue of stigma is all very perplexing.

I welcome your thoughts here.

22 comments:

George Dawson, MD, DFAPA said...
This comment has been removed by the author.
Anonymous said...

The main reason stigma exists is the whole notion of "disorder".

Perhaps the best example of a psychiatric label that used to carry the same stigma that current psychiatric labels do, to the point that even exhibiting it was a crime, is homosexuality.

For those who need a bit of perspective, they should watch this summary of a 1967 special on homosexuals by Mike Wallace.

The stuff that was said there about the "dangers of homosexuality" is no different from the stuff that it is said now about the rest of us. While this day's gay community would find tremendously insulting to have homosexuality associated with pedophilia, the gay community of 1967 had to defend itself from the accusations that the two were intimately related.

Today's psychaitry uses as one of its "selling points" that it will be able to prevent the next Newtown if only it is given extra powers to "go after the next Adam Lanza".

It is well known that psychiatrists have no ability to predict who's likely to become violent and that so called "mental illness" is not a good predictor of violence -being African American is according to FBI data the best demographic predictor of potential criminal behavior in the US- but what do you think is the effect of perpetuating the falsehood that they can? Well, the creation of a fallacious assocation "psychiatric disorder"/"violence" in public opinion.

So, you want to end stigma? Do to each of the 300 + labels listed in the DSM what was done to homosexuality. Then fight to do with the laws that force psychiatric treatment on people what Lawrence v. Texas did to the laws that criminalized homesexuality. Then those of us who have been unfairly targeted with a stigmatizing label by the APA will have a decent chance of gaining some respect in society.

Until that happens, this will continue to be our reality.

Sandra said...

I don't believe it's true that ADD isn't stigmatized. It is accommodated more and more, structurally, but socially many people still stigmatize the symptoms.

In the article Attention Deficit Hyperactivity Disorder as a Social Disability, Gentschel and McLaughlin, Journal of Developmental and Physical Disabilities, 2000, researchers found that children stigmatized their peers based on stereotypical ADHD behavior.

I wrote a blog post based on the idea that social stigma isn't a result of labelling, it's disturbing and upsetting behaviours that perpetuate it, as you too point out. I believe effective treatment can help reduce social stigma as it reduces symptoms.

http://psychcentral.com/blog/archives/2013/08/03/access-to-treatment-is-the-best-way-to-fight-stigma/

The Alienist said...

Isn't it interesting that the problem with stigma is in everybody else? We're O.K. but everyone else has this pesky "stigma" problem that we can't get them to give up!

I wonder what would happen if we simply got the mentally ill not to accept the shame that comes with stigmatization? What if they demanded that they be treated with respect? How might life change for patients, their families, and their friends who see "stigma" as a sign of moral and social ignorance in disrespectful people?

Neil said...

I think that ADHD has become quite trendy. That's not to say it doesn't exist--certainly it does--but it is more often diagnosed in middle and upper socioeconomic classes, and like the phenomenon of being perpetually busy, it can be a kind of badge of honor. Being on Adderall now is what being in analysis was in the 1960's.

Anonymous said...

The Alienist,

The stigma will continue to exist for as long as we continue to be legally stigmatized by way of the discriminatory laws that target the so called "mentally ill" in a way that they do not target obese people (even though these would benefit form being kidnapped to a fat camp for a couple of months) or gay men (even though forcing all gay men on Truvada would significantly reduce the number of HIV transmissions and with it, over time, the expenditures on AIDS).

There is stigma against the so called "mentally ill" because we are legally deemed second class citizens unable to make our own decisions.

When a gay man, considered otherwise "non mentally ill", says no to Truvada and no to using condoms, society respects his choices even though he might be putting other people's lives at risk and costing a lot of money to society in the future if he ever gets HIV.

When a so called "mentally ill" person refuses to be on psychotropic drugs, he/she needs to be "AOT-ed" for his/her own good. The laws cannot be more perverse and bigoted than this.

As long as this different regime exists for the "mentally ill", stigma will continue to exist. It is what happened to blacks, women, gays and every other group of people that was legally targeted for discrimination in the past.

PsychPractice said...

I suspect stigmatizing any group has a lot to do with feeling out of control. That's why obesity is such a perfect target. It's perceived as a lack of self-control (I VERY much doubt it's anywhere near that simple). So if, unlike those lazy, undisciplined obese people, I control myself, I will never be obese. They're bad, and I'm good. So I have some control over my destiny.
I think mental illness, the idea of "losing ones mind" whatever that means, is much more terrifying to most people than becoming obese. And the idea of having no control over whether or not one loses ones mind is even more terrifying- often to the point of being intolerable. So the more I can call those people crazy and bad, the less like me they are, and the less likely I'll be to "catch" what they have.
It makes no rational sense, but I believe it makes emotional sense, and drives a lot of the stigma that exists.

Elbee said...

Most recent anonymous,

Woah, I can see you were trying to make a point, but a fair number of HIV/AIDS is through heterosexual contact. I definitely can understand your point that about how the mentally ill are treated, but I have some concerns about the analogy and some of the assumptions I feel it makes.

I think the stigma is partly because it's a disease of the mind which is scary to people--potentially not being in control of your mind is different to people. There may be a lesser degree in some people's eyes with ADD.

Maybe like the Alienist says we should try to refuse to accept the stigma/shame just as the LGBTQ community did--such as the chant "we're here, we're queer, get used to it.

Dinah said...

George -- your comment vanished before I could respond.

Anon: Agreed that what is stigmatized changes over time. I think we need some form of diagnosis for research and for targeting treatments, but I imagine you will not agree with that. We're not likely to change each others' minds here.

Sandra -- I agree, the best way to destigmatize may be effective treatments that allow control of troubling symptoms, that's a great point.

Alienist : I thought your blog had gone silent. Glad to sse you're still here. There is a Mad Pride movement.

Neil: Adderall vs psychoanalysis -- it has a different flavor.

Psych Practice: Can I borrow some of your self control? I worry more about becoming obese than about getting a mental illness, and not because I feel a sense of control over either. We don't have control over getting brain tumors either, and they aren't stigmatized.

Elbee: Hi!

Anonymous said...

Dinah,

I am the two Anonymous. With all due respect I think you still don't get it.

The problem is not that the patterns of behavior that are stigmatized change over time, rather, the fact that they are stigmatized to begin with with a "diagnosis" that is the root of stigma.

A "diagnosis", whether it is a psychiatric diagnosis or a diagnosis for a physical ailment is synonymous always with "there is something wrong with X and we are going to fix X".

If X is a kidney, lung or a stomach, people don't care or even feel sympathetic with you.

If X is a pattern of behavior, or in other words "what people regularly do" vs "what people have in their bodies" then people obviously are afraid.

Any of us would be "afraid" of having a neighbor who has served a 20 year sentence for sexual assault.

You see, what you call "diagnosis" is in fact a stigmatizing process onto itself in the case of psychiatry because it is telling somebody "how you regularly behave is wrong".

You might ask why this doesn't happen with other areas of medicine and the reason is because other areas of medicine are not in the business of "diagnosing" anomalous patterns of behavior.

So when the general public, which is not known to be subtle in its analyses, sees a bunch of "respected MD degree holders" agreeing that "anyone who exhibits pattern of behavior X is disordered", obviously they want nothing to do with those "disordered people" in the same way most of us would want nothing to do with a convicted rapist.

So my original point comes down to this: there will be stigma for as long as psychiatry exists because of the nature of psychiatry itself that makes it different from other areas of medicine. Everything that organized psychiatry has done to decrease stigma has backfired, because the only effect of these "anti stigma" campaigns is to make people aware that there are people who "behave regularly in an anomalous manner" in circulation, so the day to day stigma endured by people like yours truly goes up, not down. There are studies that show this and I can make them available to you if you are unaware of them.

Elbee,

I am not trying to be politically correct with the matter of gay males, just use the data from the CDC,


"In 2010, gay and bisexual men accounted for 63% of estimated new HIV infections in the United States and 78% of infections among all newly infected men. From 2008 to 2010, new HIV infections increased 22% among young (aged 13-24) gay and bisexual men and 12% among gay and bisexual men overall.
Among all gay and bisexual men, white gay and bisexual men accounted for 11,200 (38%) estimated new HIV infections in 2010. The largest number of new infections among white gay and bisexual men (3,300; 29%) occurred in those aged 25 to 34. "

MSM make approximately 2% of the population. Targeting them for forced Truvada would have a significant impact in the decrease of new HIV infections and, over time, in the AIDS epidemic itself in the United States. Because of their small number, and because they tend to cluster in cities, said plan would be feasible. We don't do it out of respect for their civil rights. Somehow, the same respect does not exist for the so called "mentally ill", even those who are harmless and deemed capable of making their own decisions (which is the people who are targeted with AOT). Our involuntary commitment laws already allow for targeting of anyone deemed "dangerous". I still have a problem with them, because psychiatrists cannot predict violence, but they exist. Our capacity laws already have ways to deem somebody unable to decide by himself/herself. AOT is for people who are neither dangerous nor deemed incapacitated. So the institutionalized bigotry is there for everybody to see.

EastCoaster said...

PsychPractice is right on. And the big problem I saw when I worked in a State Hospital was that a large chunk (maybe even a majority) of the staff were so afraid of catching craziness that they were the most stigmatizing of all.

Seriously, all mental health professionals should be required to undergo personal psychotherapy.

What I think does need to be tackled vigorously is outright, blatant discrimination. Louisiana was just forced to stop asking bar applicants whether they had ever received mental health treatment. Now they have to focus their questions on behaviors or histories of behaviors that could harm their clients. The latter is legitimate.

Anonymous said...

The best way to end stigma is to stop telling people they are have a "mental illness". And to begin to tell them they can recover.

This is even true for bipolar, anxiety and severe depression.

People go through breakdowns and then they recover. They get back to work; back to life.

Nothing has caused more stigma than the myth that mental illness is a lifelong, uncurable illness. People diagnosed begin to believe it. And begin to act "ill"... Friends and family treat them as if they are "ill."

And it is simply not true. It is stigmatizing.

Anonymous

Anonymous said...

And people who have been diagnosed with schizophrenia also fully recover.

Some good examples of mental health professionals who have fully recovery from "schizophrenia":

Ronald Bassman, PhD
Mary Ellen Copeland, PhD
Pat Deegan, PhD
Daniel Fisher, MD, PhD
Rufus May, PhD
Shery Mead, MSW

Lots of people, ordinary people, without advanced degrees, who are not mental health professionals also fully recover - all the time; every day.

When a person rejects the psychiatric label, and begins to embrace life, all kinds of good things happen.

And the sigma disappears. It is replaced by living a full life.

Anonymous

R. said...

I would argue almost the opposite point of what the Anonymous commentator suggests. In my experience, when people can accept that mental illness are in fact illnesses, it decreases stigmatization. I know for me it was helpful to accept that my depression was not "my fault" or something that was wrong with me as a person, but a legitimate medical condition. The fact that it is an illness leads hope that it is treatable. With treatment I can lead a fairly productive, happy life.

I also fail to see how the idea that mental illnesses are in fact illnesses automatically implies that they are incurable. In fact, for depression, my understanding was that the current general practice for individuals experiencing their first episode was to prescribe medications and encourage therapy for a short period of time (3-6 months maybe?) and that most such individuals will be fin once treatment is discontinued.

Anonymous said...

R,

This is an issue in which it is pointless to have an argument about anecdotal evidence. As I said, the studies on the matter are very clear, for example

"We identified 33 studies relevant to this review. Generally, biogenetic causal attributions were not associated with more tolerant attitudes; they were related to stronger rejection in most studies examining schizophrenia. No published study reported on associations of biogenetic causal attributions and perceived responsibility. The stereotype of self-responsibility was unrelated to rejection in most studies. Public images of mental disorder are generally dominated by the stereotypes of unpredictability and dangerousness, whereas responsibility is less relevant."

And those are just studies about perception. Try to engage in any activity that would require you to disclose your psychiatric past, those exist despite the American with Disabilities Act.

You will soon learn that the stigma is not only social (people dislike you because of your psychiatric past) but legal.

Not to mention, God forgive -and I truly mean that I don't want this to happen to you or to anybody-, you do something that some "do gooder" mental health professional believes puts you in "danger", even though for somebody without a psychiatric past the same conduct would be considered harmless. You'll be involuntarily committed, as it happened to this guy. The latter link comes from the most recent entry in Shrink Rap.

In short, I think that the study I mention above (which itself is a review of 33 studies) and our laws show that a psychiatric label is onto itself stigmatizing. Our laws have provisions that legally discriminate against anybody with a psychiatric label. All "mental health laws" in the United States have as their activation mechanism for determining whether somebody can be involuntarily committed or forcibly drugged that the person be assigned a DSM label. You have not been assigned that label, the same conduct does not deem you a "danger to self or others". This to say that the bigotry that DSM labels are associated with "stereotypes of unpredictability and dangerousness" -quoted from the above study- are embedded in our laws as well.

You might not have found this stigma yet, but that's probably because you haven't interacted with enough people or tried to do anything that would make the issue relevant, such as getting a security clearance or joining the military. The status of DSM labels in the case of the military is very ironic. You can be banned from enlisting if you disclosed a psychiatric past, but once in, soldiers are regularly drugged with psychotropic drugs to keep them in their jobs for long hours. Go figure!

Dinah said...

Maybe the son really was going to commit suicide and the zealous mental health worker prevented it.

The article tells it from the dad's perspective, and he didn't believe the son was serious. I'm thinking that at least a few of the many people who committed suicide may have been a surprise to those they left behind. Which is not to say that I think people should be rounded up just in case they might hurt themselves, but the power of the story linked to is the assumption that the people who committed the patient were wrong, that it was a miscommunication by inept professionals who couldn't be bothered to clarify, flush out the truth, and devise a safety plan and follow up care, (and this may be true). But we are left to take dad's word that this is what transpired, and maybe the son did not want dad to know just how suicidal he was. I obviously don't have the truth, but these things are often a lose-lose situation. I'm hiding my ketchup from the cannibal cop, just in case.

Anonymous said...

R,

Thank you for the response.

To clarify, I think that mental illness can be illnesses, in the event that depression is a symptom of some other underlying medical condition, which can certainly often be the case.

However, with that being said, the science does seem to point to better recovery rates for people who do not take psychiatric medication. -

http://www.madinamerica.com/source-documents/

In regard to the "incurable" illness comment, what I was trying to say is that continued medication, often lifelong is the course of treatment, prognosis for many.

Lastly,(back on subject)studies seem to indicate that for many, the "chemical imbalance" diagnosis may initially help a patient, but often creates a sense of hopelessness in the long run. Paula Caplan, PhD has written about this.

And the general public seems to have more fear, more stigma for people who have a "serious brain disorder" than say for someone who might tell them they "had a breakdown" or "get very sad sometimes."

Anonymous

Anonymous said...

I think stigma around mental illness will only worsen, because of the t.v. mental health professionals rush to assume that every mass murder is the result of untreated mental illness. We don't know that, yet they state it as if it's fact. The predictable result is that society equates mental illness with violence. If we could encourage the media to interview more reasonable mental health professionals, then I think things could be better. I'm not holding my breath that that will happen, though.

Another thing that increases stigma is the push to take away rights from people with mental illness. I want (and expect) to be treated with the same rights as any other patient.

Where I have felt less stigma is with my current therapist and psychiatrist who both treat me like an adult.

P-K

catlover said...

I notice that the longer I stay married, the less stigma there is. Interesting.

jesse said...

This was just posted on the Vivien Leigh and Laurence Oliver Facebook page, and references Stigma:

Last night, one of our fellow fans posed the question, "Did Vivien ever contemplate or attempt suicide?" I had to sleep on it before answering because it's not that straightforward. Now, you might be saying to yourself, "Kendra, this is Facebook, why are you spending time talking about such a serious and sad subject?" The answer is because we cannot combat the stigma surrounding mental illness by pretending it doesn't exist. Regardless of how uncomfortable it might make some fans, this was a major part of Vivien's life and deserves to be explored and understood as much as possible.

While researching for Vivien Leigh: An Intimate Portrait, I spent quite a bit of time looking into Vivien's mental health, what it was like to be treated for a major mood disorder in the 1950s and 60s, etc. Not all of Vivien's medical records are available. When I contacted the Surrey History Centre for information about her stay at Netherne hospital in 1953, I was told that her admissions cards still exist, but her case files do not. I don't know what happened to these. It could very well be that she and Larry, or Suzanne requested they be destroyed at some point. Her records as held by hospitals and clinics are only available by permission of her estate (Data Protection Act, I think).
However, there are still quite a few primary source documents in archives that shed bright light on Vivien's situation. In 1939, during the filming of Gone With the Wind, Vivien's live-in secretary, Sunny, phoned and then sent a letter to Laurence Olivier in NY saying that Vivien had ODed on sleeping pills, was stumbling around the house, had to be thrown in the shower and missed work the next day. Sunny promised Larry that Vivien was sorry, that it had been an accident, etc. Larry then wrote to Vivien, chiding her for her reckless behavior, saying she led her loving ones on a terrible dance, and encouraged her not to "give way in front of the common herd like this." Was Vivien playing with fire? Yes. Do I think she tried to kill herself at age 25? Probably not.

One of the most illuminating documents available to researchers is a report sent to Jack Merivale by psychiatrist Arthur Conachy in 1960 when Merivale took over from Laurence Olivier as Vivien's primary caregiver. Keep in mind that Conachy treated Vivien from the late 1950s to the early 1960s. He wrote, "there can be no doubt that she has a cyclic manic-depressive psychosis....Her retardation [when depressed] is of a moderate quality, and although, in this phase she thinks of suicide, I do not think her illness, up to the present, has been of a degree to make suicide a practical risk."
Make of that what you will.

One comment is: She was clearly not trying to kill herself when she overdosed while making Gone With the Wind. She she was on top of the world then--& she was plainly trying to quell the raging insomnia that is so common in serious mania. You don't have to read the many reports of her,let's just say, supercharged behavior while on the set of that movie. The mania charges through the whole performance, and it's what gives her acting in that part its still unrivalled intensity and its galloping mental speed. You just have to compare the improbably quick, brilliant woman giving the performance on screen with the sluggish, rather sadly pensive woman accepting the Oscar to see the difference between Vivien manic and Vivien depressed--they're two different people...... As far as her being a suicidal depressive goes, if she didn't try to kill herself when Olivier finally left, I doubt she would ever have done anything more than think about suicide in her subsequent depressions.

Anonymous said...

In my opinion, the medical profession (i.e. clinicians such as yourself) have almost singlehandedly prevented the de-stigmatization and positive social integration of people with mental illnesses. The social opprobrium of even the most “odious” symptoms could be significantly reduced if the mental health system became determined to “prove” that the average person is capable of treating people with mental illnesses as their social equals and of recognizing their worth as complete human beings. Psychiatry has already back-pedaled on racism, sexism, and homophobia. Why not back-pedal on sanism and quit blaming the victims?

Aaron said...

Good and helpful explanation. Thank you for sharing this to us.