To Move Beyond Stigma, We First Need to Understand It

By Barbara Thompson | Mar. 04, 2016

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NAMI On Campus group promotes mental health awareness in order to help end stigma.

I know what stigma is, rather, I know what stigma feels like: shameful, isolated, lonely, scary and uncertain. We all have some understanding of stigma. As mental health advocates, we work to dismantle the negative feelings surrounding mental illness by offering facts and experiences that we hope will foster understanding.

At Indiana University in Bloomington, Indiana, Distinguished Professor of Sociology, Dr. Bernice Pescosolido, has spent her career studying stigma related to mental illnesses. She was recently awarded the 2015 Distinguished Investigator Grant from The Brain & Behavior Research Foundation to further explore the topic. Dr. Pescosolido will reinvent and repeat the largest U.S. survey done on mental illness stigma. The original study, which was initiated by Dr. Pescosolido in 1996 and replicated a decade later, found that prejudice remained even as people became more accepting of mental illnesses as neurobiological brain conditions.  

The 1996 study was the first broad study on stigma in 50 years. In that time, the 1996 study found that people had broadened their view of mental illness to include non-psychotic conditions. Paradoxically, that half-century also brought on a greater number of people defining mental illness in terms of violent or ‘frightening’ behaviors.

The 1996 study also found that nearly half of Americans felt that the government should be spending more money on mental health services.  Only 1 out of 10 people felt there should be less spending. Since that time, NAMI has found that states have been significantly cutting spending on mental health services. In the most recent report, State Mental Health Legislation: Trends, Themes and Effective Practices, NAMI pointed out that funding decreased in more states than it grew.

In 2006, this study was recreated to get a sense of whether or not anti-stigma efforts were working. The results again showed that people were continuing to understand the biological basis and moving away from the past ideas of moral failing and personal blame. Yet again, the stigma remained. The 2006 study found no significant change in stigma. Slightly more than half of those surveyed said they would be unwilling to socialize with a person living with mental illness.

This latest survey is scheduled to be conducted in 2018 and will be Dr. Pescosolido’s third evaluation of how society views people living with mental illnesses, in hopes to identify a direction forward for anti-stigma efforts.

“I feel like it’s a duty. We need to keep our finger on the pulse of prejudice and discrimination so we know how to fight it,” said Dr. Pescosolido about her work around stigma.

Now comes the dictionary definition. According to dictionary.com stigma is, “a mark of disgrace or infamy; a stain or reproach, as on one's reputation.” For Dr. Pescosolido, stigma is considered a mark placed on a person or group that separates them from other people. Those with the mark experience prejudice and discrimination.

The move to de-stigmatize mental illness is not new. NAMI and others have been working for a long time to spread awareness and start conversations about how mental illnesses are treatable and people can live meaningful lives while managing their illness. Despite these efforts, stigma persists.

In her article, ‘The Stigma Complex,’ published in The Annual Review of Sociology 2015, Dr. Pescosolido describes the limits of education and improving knowledge as a way to destigmatize mental illnesses. “Americans get it,” says Dr. Pescosolido, “that it is a brain disorder...but we saw no change in stigma.” A 2013 global study done by Dr. Pescosolido, shows that nearly 75% of those in the US would not want an in-law who is living with a mental illness.

 “Society doesn’t change quickly, but I think it is important to stay the course,” says Dr. Pescosolido. “If you want to reduce stigma on a large scale, you really have to know what is stigmatizing.”

There is some good news: anecdotal evidence that stigma may be less prevalent in younger generations. Over the decades that Dr. Pescosolido has been a professor, she has noticed a change in her students’ attitudes about and willingness to discuss mental illness. While her students in the 1980s would wait until after lecture to privately discuss a family member’s diagnosis, she notices that her students today are more open and will discuss mental illness diagnoses during class. Dr. Pescosolido feels that this phenomenon will be reflected in her updated study on stigma.

“They didn’t grow up in the era of asylums,” says Dr. Pescosolido of her current students. “This generation sees themselves as very powerful.” Dr. Pescosolido says her students are much more willing to talk to their friends and family about mental illness.

Once completed, Dr. Pescosolido’s study will be the first update on the prevalence of stigma in 22 years. Dr. Pescosolido hopes to revisit the study every decade to measure its hopeful decline.

You can be a part of positive change by pledging to be stigmafree, and by spreading the word about important stigma-busting resources including ok2talk.org and notalone.nami.com.

 

Comments
Megan Radeski
This is a great discussion
8/18/2016 10:55:58 AM

Lisa Kavanaugh
This comment is for Maria: Please contact the NAMI office nearest you and join their support group, take the Family to Family course and know you are NOT alone, your feelings are well known to many of us who have a loved one suffering from a disorder they did not ask for or cause any more than one could diabetes or a broken leg! There is hope...new therapies and much to look forward to as NIH and NIMH work to find more answers. Love and support from those who understand is critical in helping dissolve the stigma. One begins to realize the "label" is less important than the treatment. Advocating for each other, supporting each other through the rough times and never giving up is why attending support groups is so valuable. You are not alone. You did not cause this. Your daughter did not cause this. Things can improve. NAMI will help both of you - I know because they've helped me and my 35 year old son.
4/4/2016 3:54:22 PM

Don Legun
Bad stigma comes from the unknown. When my wife first suggested I seek help, I resisted because I didn’t understand how the system could help me. I didn’t know what was on the other side of that door and so I was afraid to open it and go through. Mental health education should no longer be an option but mandatory in grades as low as middle school. I had the opportunity to tell my story to 5 middle school classes that responded with 85 personal thank you notes that revealed a need for knowledge as far as recognition, treatment and where to go for help. Two students admitted to considering suicide before the presentation and said they would seek help because of what they learned. The explanations I gave helped provided a better understanding and acceptance of those with mental health issues. I showed the notes to Dr. Terrie Moffitt of Duke and she responded, "the important evidence of impact shown by the children's letters to you is that stigma against people with depression was reduced, and willingness to talk to an adult about feelings of depression was increased." That was 5 years ago. I can make those notes available to anyone upon request and the presentation I provided the students has been published as, “My Side of Depression.” What I stumbled upon worked that day and could be like a prototype. I believe that an accredited mental health curriculum, professionally done and provided to all middle school health teachers as a educational tool (to include parental involvement) can not only eliminate the bad stigma but also reduce teen suicides. By including parents in assignments and making this education mandatory (just as we did with drivers ed), the bad stigma of mental health can be purged from society as these students bring their knowledge into the adult world. The success requires a saturated education that can best be achieved if consistently taught in all of our schools.

I don't have the degree behind me because by being bipolar, my behaviors are not consistent enough to go back to school to get an advanced degree however, 27 years of suffering, 3 suicide attempts, 4 hospitalizations and a speaking tour have given me access to many people who have shared their stories with me. A quote from a psychologist friend who has known me since grade school describes my writings this way, "You, however, are of a scientific mind and this gives you the capacity to explain irrational feelings. Also, most "scientific minded" (for lack of a better word) people would never bother with the world of the irrational (feelings). So, this is really a nice combination that you've got going, Don." If I was stable I would love to get back into the academic world and advance my education degree and build this tool but I am not. However, I am free to share what I've learned with anyone at any time. For my personal healing, I need to give meaning to my pain and I believe I have a lot I can offer.
4/1/2016 10:03:51 AM

Sandee C.
I have a son who was recently diagnosed with Bipolar a few years ago. He went off to college in his freshman year but returned home on his Thanksgiving break a different person. I was so hurt, helpless, and disappointing for many months. At the time, I lost over 20 lbs., had dark circles around my eyes, and didn't have an appetite to eat anything. My son was in denial as I was. He wasn't taking his prescribe medication on a daily basis. My son recently relapsed due to stress and not taking his prescribe medication. At times, I feel helpless, hurt, and disappointed. My son now knows the importance of taking his medication as prescribe but he is very concerned how his friends and family perceive him as having bipolar. The prescribed medication has a few side effects such as: muscles in his face area is shaking uncontrollably, he cannot get his thoughts together, he stutters a lot, he has blank stares, etc. My son was very smart, sociable, and outgoing. He's seeing his psychiatrist, therapist and group support on a regular. I just feel helpless seeing my son encounter this disease.
3/31/2016 11:54:48 AM

c j buechler
I think the stigma issue is much bigger than you realize. Remember alcoholism? A recovered alcoholic is almost admired for overcoming addiction. But a mental illness label is a social black mark that never disappears. Telling the history in gossip is exciting. And maybe if stressed those weird behaviors will return.
3/31/2016 9:12:20 AM

Cas
Mental illness is a biological condition. Some day there will be clear markers identified so that tests can to run just like we do for a heart condition.
In the meantime there is a need to fight mental illness prejudice just like prejudice against races, religions and life styles. Mental illness somehow needs to have an every day face put in it so the average isn't afraid and understands. Just like being gay or lesbian or whatever. Public education and awareness is needed. Then acceptance and understanding will follow.
This should be a top priority for nami.
Just one person's opinion.
3/31/2016 8:51:03 AM

L K Tucker
Maria, __ The age, and activities of your daughter put her in the risk group for visual subliminal distraction caused psychiatric symptoms. This is not mental illness. But since the engineering discovery is unknown in mental health services, it can be diagnosed as such. __ There is no cost or treatment involved in investigating her activities to determine if she is making the "mental break causing design mistake" engineers found and solved fifty years ago. This search will not interfere with any treatment she now has. Just Google Subliminal Distraction and learn how to find sources of exposure where she works, studies, or uses a computer. Then take simple free precautions to stop it. Avoiding Subliminal Distraction will eliminate symptoms it can cause. When it happened to my wife after her office was changed eliminating Cubicle Level Protection, it was mistaken for schizophrenia. When I found an engineer to explain it her doctors refused to call him. I learned of the problem with the physiology of sight as a 22 year old engineering student in 1966. But I had never seen the mental event happen before.
3/30/2016 7:20:11 PM

Janet J Memoli
I am so sad about the stigma of mental health and it extends to the psychiatric nurses who care for these patients. I am doing an event in Fort Myers, Florida on May 14, 2016 called Mayday to help end the stigma surrounding mental illness. I feel the more we talk about it, the less stigma gets attached. I am also doing it at a church to make it more accessible to the public. See our website at www.mentalhealthsaturday.com. I am sorry to all the patients and family members out there living with this disease and have no where to talk to.
3/30/2016 7:09:50 PM

Tina Cline
Great! Greater! Greatest!
3/26/2016 3:00:20 AM

Maria
Can someone please tell me if what I am experiencing is normal for a parent of a 29 yr old diagnosed with depression with psychosis. I feel incapable of accepting it as the stigma of having had a father who was diagnosed with schizophrenia was very terrible. I feel anger at almost everyone who tries to make me feel like something is wrong with my daughter. I want to run away and leave her sometimes , I want to escape the terrible guilt that I am a bad mother and am to blame for her trauma. I try to bargain with God and ask him to give me this illness and take it from her, and then I find myself slipping into depression, losing interest in everything and feeling like I have no one who I can talk to about these feelings because I feel like I'm being judged. Some days I feel that I must be going crazy too. I hate all the labels , Bipolar and Schizophrenia and autism , I feel that I would rather be the one to be put in an asylum , if only my daughter did not have this stigma , this disease, whatever it is because it makes no sense to me. She was finishing her Phd when a friend betrayed her and then she snapped.
3/20/2016 3:39:06 PM

Darcel Fode
Dear Jean, Thanx for sharing your heart. I am sorry about your son. You only get so many days... explore self-care and
you'll also be a better mom to your son. Our family is touched by mental illness and a rare incurable brain disease. There is HOPE for a cure as well as managing... people don't know what to say, so they didn't.
None of us know the the future... you've done your homework... Now go out and enjoy the day with your son
instead of worrying about tomorrow..... Trust ... God Bless, Darcel
3/19/2016 11:08:17 PM

Laurie O'Reilly
LK Tucker - Your comment has just informed me of another possible contributor to mental health challenges. It is vital that concrete bio markers, such as those used to diagnose Diabetes using science to ascertain sugar levels, are established so we can diagnose mental health challenges accurately. Other possibilities being researched are the gut-brain connection and inflammation. If anyone knows of any more, please share : )
3/16/2016 2:16:00 PM

Jess
Re: Jean Daquila, Thank you for sharing your story. It was wonderful to read as I have a son who is suffering too. Getting that kind of dialog started is indeed doing a part to bust the stigma! And, also, I think some people don't know what to say so they say nothing as to not offend. I love hearing of instances when the younger generation are open and easy about discussing mental health issues. It's a great thought for the future. Best to you and your family. Keep your chin up!
3/14/2016 3:44:13 PM

Jean Daquila
I have a son who was diagnosed with paranoid schizophrenia in 2013. He is 28 years old now. I tried to very timidly, at first, post comments to my FB timeline, hoping my friends would get the hint. Many of my close friends do know about my son's diagnosis, and yet they did nothing. Not a comment, not a like, no private messages to me. I was extremely hurt and angry and just could not fathom that even my ex in-laws said not one word. His own grandmother and many cousins were silent. BUT when my daughter, who is 25 posted on her timeline, she did get some feedback. She figured it out herself, that her generation is a bit more accepting than mine, which made perfect sense! So when I read the above "They didn't grow up in the era of asylums," wow, I thought, my daughter is one smart cookie! I have since become quite outspoken on my FB and my friends are reaching out to me with public comments, private comments, and phone calls! I feel much freer now to post where before I would practically have a nervous breakdown just trying to decide should I or shouldn't I? And because of this, others are actually now posting about mental illness! I feel I am contributing in some way to bust the stigma! I am my son's advocate! I am very heartbroken, I am not who I was before Sz. I fight every single day to keep my chin up and some days I fail. I end up some days crying ALL DAY! I am very well educated on my son's illness and I observe him closely. I know there will not be a cure in his lifetime, and I realize that I will probably never be as I was before, just as he is never going to be the same either, but I have reason to work to become a better person now and to keep my chin up more and more. My daughter is a single mother of twin toddlers and my heart is bursting with love for them as much as it is breaking at the same time for my son. In so many ways, I love him even more now than I ever have (if that's even possible) I don't know who will see this, but I hope someone does. I hope that people will try to be understanding that people like my son are people, too. Thank you.
3/7/2016 12:33:37 PM

L K Tucker
Many of the believed symptoms of mental illness, panic attacks, depressive episodes, bipolar disorder, and even some instances of chronic Subliminal Distraction episodes mistaken for schizophrenia, are preventable if they are caused by visual subliminal distraction. Avoiding it is simple, free, and will not interfere with any treatment you now have. There is no down side to learning what visual subliminal distraction is. VisionAndsychosis_Net
3/5/2016 5:22:39 PM