The stigma experienced by patients with psychiatric disorders

“It don’t matter how many men you shot in Memphis,” the saying goes, “if your name is Sierra or Sequoia, you can’t sing the blues”. In a sense, this adage reworks an older, more bitter joke from the civil rights era, the one that begins “some of my best friends are …” and ends with “but you wouldn’t want your sister to marry one.” Both statements embody stigma, the social effects of being someone who violates others’ expectations or fails to fit into an assigned social niche.

Stigma attached to illness has a long, ignoble history. The most classic example, the devalued social role of lepers, illustrates its classic elements: fear and avoidance. Deformities elicit basic revulsion in many, while infections also trigger fear of contagion. Historically, some of the positive stigma that doctors enjoy reflects our ability to transcend our fears and provide care to those whom society would consign to the desert beyond the pale of a socially integrated life.

In modern times, patients with psychiatric disorders (including addictions) experience stigma in painful and damaging ways. The American Journal of Public Health devoted its entire May edition to the consequences of the stigma that plagues those with mental illness and the disordered behaviors that it often causes. The bottom line of the Journal’s complex assessment across many articles: stigma kilIs. According to Hautzenbuehler et al, increased health care costs, poorer health outcomes and, most tellingly, premature death are all consequences of having a psychiatric disorder of any kind. While we all intuitively “get” why people with schizophrenia or addictions might face stigma based on their disruptive, non conforming behavior and the frustration caused by the intractability of their conditions, the negative consequences of having a psychiatric disorder also extend to otherwise normal appearing people with depression and anxiety, and, most tragically, to children.

The journal appropriately parses stigma into its component elements, which are prejudice (beliefs about undesirable others) and discrimination (behavior towards the undesired group). Discrimination in its most damaging form is utterly impersonal: the social policies that discriminate by denying insurance coverage and setting insurmountable barriers to employment, housing and other social goods mean that however enlightened, broad minded and compassionate we are, we cannot help but compound the stigma that gradually impoverishes the lives of our afflicted friends, neighbors, family members and others who comprise the population of the mentally ill.

The cure for prejudice is education and engagement with the stigmatized group. The cure for discrimination is policy reform. The Patient Protection and Affordable Care Act builds on the principles underlying three earlier federal laws that were passed to reduce discrimination: the Mental Health Parity and Addiction Equity Act of 2008 (which supplanted the Mental Health Parity Act of 1996), the Education for all Handicapped Children Act of 1975 and the Americans with Disabilities Act of 1990.  The PPACA mandates that essential benefits packages offered by insurance plans include mental health and substance abuse coverage and that the benefits offered fulfill the requirements of the MHPAEA. While this is a laudable development with the potential to save both money and lives, it does not go far enough.

The mass shootings in Newtown and elsewhere have shined an intense spotlight on the deficiencies of the mental health care system in this country. Although many have called for reforms, there has been little recognition that insurance companies are still allowed to delegate  the management of benefits for mental health and substance abuse care to specialized firms, socalled “carveouts” . These firms continue to violate the spirit of mental health parity legislation with impunity.

In Washington, DC, where I practice, for example, psychiatric hospital stays are ludicrously short. Outpatient visits may be reimbursed less if the doctor codes both psychopharmacology and psychotherapy services for the same visit (as it now permitted under new CPT codes) than if the doctor bills for psychopharmacology alone.  As a result of persist discrimination, few psychiatrists accept direct insurance payment, which leaves patients who cannot pay out of pocket for care unable to find anyone to treat them.

All the major carriers, including Blue Cross and Blue Shield, participate in this endless effort to avoid paying fairly for mental health care. Perhaps it is no longer necessary for Sierra or Sequoia to shoot someone in Memphis—if they happen to have a serious mental illness, maybe they are in fact entitled to sing the blues.

Julia Frank is a psychiatrist who blogs at Progress Notes.

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  • DavidBehar

    The stigma is well deserved. It is a bias, but totally accurate. This left wing cry baby psychiatrist is enabling to the devastation mental patients cause. The last two paragraphs reveal her real agenda, more pay.

    Are you kidding me? Addicts and criminals need more sympathy? They need to be caned twice then killed. She is not saying paranoid schizophrenics murder 2000 people a year, or 10% of murder victims everywhere around the world, even in low crime areas. This left wing garbage blog needs a full time truth squad. Try walking in any downtown, you will run a gauntlet of untreated mental patients destroying the quality of life of everyone else by their threatening behavior.They need to be rounded up and either forced into treatment or sent to locked facilities. This progressive agenda propagandist is responsible for enabling these devastating effects.

    • meyati

      Okay-we had a new lawyer come to town. He stepped out of the office, dropped some money from his pocket. One of the mentally ill homeless freaks picked it up and tried to give it to the lawyer. The lawyer thought that he was going to be attacked, drew his gun and killed the homeless man. His immediate defense-the shooting victim smelled, so he knew that he was going to be attacked. Of course, the homeless man spoke loudly to alert the the lawyer about his money. Even the lawyer’s companions agreed. They were going to hire him.

      Not all mentally ill people are violent or abuse drugs and alcohol. I do not want my son rounded up by fascists like you. He doesn’t even smoke cigarettes, the strongest drink is black coffee, and he has many veteran friends that have similar life styles. They live simple lives, as they can’t handle stress. My son has been a United Way volunteer for about 20 years.

      I can see why you get violent responses from the mentally ill, you scare them. For the bad or dangerous mentally, there are many others that lead quite lives with fear that they’ll meet somebody like you.

      • Mike

        There was nothing about any “dropping money from his pocket” and “just wanting to give it back” in the news stories about that crime. The victim wouldn’t leave the lawyer’s office. And the victim admits to having been on a meth bender the previous night, so he WAS a drug abuser. And the victim wasn’t KILLED, he was grazed in the leg.

        None of that means the lawyer was in the right, there’s still no excuse for shooting someone unless your life is in danger or to prevent a forcible felony, but the facts are not quite as you make them out to be.

    • BeHappy

      Wow. “They need to be caned twice then killed?!” Seriously? And your statement about “untreated mental patients destroying the quality of life of everyone else” shows just how truly narccisstic, elitist and selfish you really are. God forbid anyone should inconvenience you throughout your so-called perfect life. Pathetic that you apparently never learned how much more enjoyable EVERYONE’s life could be if everyone was treated with compassion, respect and understanding, as opposed to hatred, bigotry and disgust. Maybe the world would be a better place if the hateful, bigoted folks were rounded up and sent to locked facilities? Don’t be such a troll.

      • DavidBehar

        Personal remarks, likely from a government dependent parasite. Come to NYC, down to the subway, and stand on the edge of the platform to see if a train is coming.

        • BeHappy

          Actually, I have a college degree, a very good job with a very nice salary and benefits, a modest but wonderful home, an amazing partner of 18 years and two paid-for cars. So, no thanks. I don’t need the subway. I’ll drive myself. And while you’re busy typing so you can have the last word, just know I won’t be here to read it. I have much better things to do. Life is too short for animosity. Enjoy your life.

    • Noni

      “They need to be rounded up and either forced into treatment or sent to locked facilities. ”

      This is the problem. There’s no funding for either!

  • DavidBehar

    The commentators below are civilians. All they are capable of are personal remarks, like in third grade.

    I would like to hear from Dr. Frank. Address the thousands of murder committed by paranoid schizophrenics.

    Address the ruination of prime downtown real estate by the forbearance of the police and the lawyer for loud, threatening, untreated mental patients. Walk on Market Street between City Hall to Constitution Hall, every single block had one of these loud, untreated, threatening patients. If from out of town, I never return to Philadelphia.

    Address the devastating effect they have on property values. If you refuse to do so, I move 8 of them next to your house, see how you enjoy that. I can do that without a license or a zoning hearing. I can even condemn the house next door, to convert it into a flop house, against the will of the neighbor refusing to sell.

  • f. lusu

    dr frank- (SMHA) per capita mental health services expenditures 2010 state rankings:
    #1 DC $360.57
    #50 Texas $38.99 (Texas spending dropped to $36 in 2012)

    • Cyndee Malowitz

      Texas is so jacked up.

  • Suzi Q 38

    My sister is a paranoid schizophrenic….borderline.
    She is functioning quite well, living at home with my mother.
    She does a good job taking care of her, as I know what it would cost to have my mother cared for in a nice nursing home.

    Mom asked me if she could give my sister the house.
    I said sure. I figured after 35+ years of dealing with and caring for my mother it deserves to go to her. My siblings are not sanguine with this.

    I am more concerned about what will happen to my sister when my mother dies. She already hears voices, and thinks that neighbors and friends are spying on her with cameras under their dining room table.

    My siblings told me to “mind my own business”
    when I attempted to get her to a psychiatrist for some neuroleptic meds.
    She told me that she would not take any meds, as the meds given by doctors were “poison.” I figured she would need maybe a two week shot of low dose Haldol or something similar.

    Whenever mom goes in the hospital, I get phone calls every few hours asking me to control my sister. I finally had to tell them to get security to escort her to the parking lot, if they are unable to do their job when she is around.

    My point is that she will probably get worse, and after time, I will have no say. She will dictate what she chooses to do each day.

    I don’t expect anyone else to care more than we do.
    I will do my best, but her actions are very unpredictable at times.
    As it is, I already have to caution family and friends about her behavior when they see her.

    Mental illness is sad.

  • meyati

    My son was on a Coast Guard cutter in the Northern Pacific on a calm day when a rogue wave hit it. If it hadn’t stopped rolling at 179 degrees, the cutter would have gone to the bottom. It swung back and forth like a pendulum. My son was able to walk, so he went to the boiler room, and in the dark managed to reconnect the steam pipes. He had burns from that. He kept tripping over something on the deck, and kicked it away. When the crew restored power, he saw that he’d been stepping on and kicking the bones of his best friend, a boiler technician. The steam blast cooked and blew the flesh off of the bones. Several of his friends in the deck section were swept off the deck and probably froze to death, they never found their bodies. He had severe spinal injury-a disc was standing at a right angle between the vertebrae. This was peacetime!! I’m almost ashamed that members of my family fought and bled out in the French-Indian War in NY, The Revolutionary War, fought in the Civil War and rode patrols on the Great Plains, to protect someone like you. I know that my family bled out on Iwo, ran from Rommel at the Kasserine Pass, fought at the Bulge, liberated a Buchenwald sub camp, were attached to the RAF before Pearl Harbor, fought in the rice paddies of ‘Nam, the women served in Desert Storm, an uncle left his toes in North Korea, and you think it was a cake walk? The veterans sometimes have to wait a year or so before benefits start. My son goes up to the VA, and helps the young vets fill out papers and reduce the red tape.
    Why are you complaining that most of the people here are civilians, when it is obvious that you never humped a pack in 100 degree heat, never sighted in a new shipment of assault rifles-that’s tedious and makes for a sore shoulder in snow, ice, extreme heat doesn’t stop a gunner’s mate, that you never dug a HumVee out of burning Kuwait sand. That you were never in a carrier chain gang, did 18 hour watches on a bouncing cutter or frigate.
    They all served so people like you can express your hate. Maybe you are the one hearing voices, and has delusional paranoia–What have you done lately to help anybody? What have you ever done to help anybody?

    • DavidBehar

      Meyati: You are making my case. That benefits, and staff efforts are being wasted on lying mental patients when seriously injured veterans have to make do with fewer resources.

      • Guest

        For all the fraudulent claims out there there at least 10 that are valid. Disabled vets have at least served the country at some point. I’m ok with some fraud there if the majority of those abused by our government get some help.

        For the career welfare white/black/brown/yellow garbage I am less sympathetic.

        Your attitude regarding the mentally ill is abhorrent. God help you should a family member of yours get a diagnosis of mental illness and you have to face the ignorance and ill will of a-holes like yourself.

        One needs to suspect if you are mentally ill yourself.

  • DavidBehar

    Suzi Q 38: Thank the vile lawyer traitors on the Supreme Court for your family’s distress. Instead of making it a clinical decision to treat your sister against her will, based on her need, they made the matter into a lawyer job generating criminal trial, with a prosecutor, a defense lawyer, and a buffoon judge in the middle. After your sister hurts herself or someone else, then she will qualify for treatment, After V Tech, after Columbine, after Arizona, after Sandy Hook Elementary, after the Batman movie massacre, then these mental patients qualified for treatment against their will. Because of their immunity from tort liability for these murders by paranoid schizophrenics, there is every formal logic and ethical justification for attacking the lawyers preventing care physically. Knee cap them twice, then kill them. As they show no mercy toward murder victims, so no mercy should be shown them.

    • Suzi Q 38

      I don’t advocate violence, but how do you expect the mentally incompetent to seek treatment?
      They truly believe that they are competent.

      She is not violent yet, but even if she were, what would they do about it?

      Cage her for 3 days and force meds on her would be good, but would she even take the meds later?

      • DavidBehar

        Before the lawyer enemy took over psychiatry, there would be one question. Does she have a disorder that needs treatment? Her interest would come before that of others. Two psychiatrists would examine her, and agree, she does need treatment. There was no abuse. Two strangers would have to enter into a conspiracy that could send them to jail and destroy their futures if they lied about her. Now she could be ordered to comply with treatment. So that arguments could be limited, she might be made to accept a shot depot medication every 4 weeks, rather than pills twice a day. This delivery route actually is more effective, even at lower doses with fewer side effects. The lower blood levels are steady, rather than the up and down levels of taking pills.

        Now, the shooters at V Tech, Arizona, Colorado, and 2000 other places each year qualify for this care only after they have killed, and a trial has taken place. Just so 3 lawyers can have jobs, the prosecutor, the defender, and the buffoon in between the idiot judge. He knows nothing about nothing, yet gets to decide life and death decisions. The results are self-evident.

        A statute at the federal level must be enacted cancelling the Supreme Court decision ending the ability of psychiatry to protect patients and public. If declared unconstitutional, I would support impeaching the vile lawyer traitors. No, I do not support violence against your sister. I sure do against this vile enemy of clinical care , now in total control of psychiatry.

        • Suzi Q 38

          Thank you for your ideas.

          I will keep them in mind if she ever does anything really bad. She flips out when my mother gets ill, and she gets stressed out over her place in life.

          I knew something was wrong 25 years ago.
          what is sad is that she was beautiful and normal once.
          My family did not want to own her condition or situation as reality. She just gradually and slowly got worse.

          I just act as if what she has just told me is O.K.
          I try to tell her that I don’t think anyone is spying on her, etc. “Let’s look and make sure.”

          She has lost many jobs. The last job that she had was at a drug store. She told me that she thought people that were coming in to the store had offensive words written on their shirts.
          “What did the words say?” I asked her.
          she said that the shirts said: ” I hate you,”
          “I think you are a b1tc#.” “I am going to kill you.”
          I told her to just quit her job as the people that came in don’t really mean anything, but they are not educated. She did, thank goodness. I could not risk her getting into a confrontation with a stranger in a public store.

          Now that my mother is getting older, the family is getting more nervous as to how our sister will react to this life change, whenever it comes.

          The treatment scenario of the past would have worked out well for us. I think it has gone on for so many years that she is so used to this way of living. She has no friends, and family members do not want to spend time with her.

          • DavidBehar

            Sad waste of 25 years. The goal for her would be to have her absolutely normal in her achievements, work, family, personal fulfillment. My usual line is let me manage your symptoms, and clear the brush for you. You manage your life. I never argue or try to disprove the beliefs of paranoid people. I say, I respect your sincere beliefs. All I want to do is not prove you wrong, but make you more comfortable enough to focus on living well.

            The sequence in time of treatment response, is agitation in hours, voices in days or weeks, delusions in months (many). So steady treatment is essential.

            The best place for her is a supervised personal care home, where staff will do the work needed to help her.

          • Suzi Q 38

            Isn’t it? She is my big regret.

            I think my mother knew, and kept her at home because she wanted a nurse for herself when she aged.
            She knew something was wrong, but didn’t want her to get help.
            I remember setting up an appointment with a psychologist, but the wait time to see her was 2 months. By the time it was time for her appointment, she would calm down and my family would tell me to mind my own business.
            Without family unity on the topic, we would just get through each month or day.

            Thank you for your ideas.

          • DavidBehar

            You can thank the lawyer for this family tragedy, and you can thank the lawyer for Sandy Hook , V Tech, Arizona, Colorado, and thousands of other slaughters of innocent strangers by untreated paranoid schizophrenics. Be grateful she has not hurt anyone.

          • Suzi Q 38

            Thank you.
            I pray that never happens, as it has not happened in the past.
            I wish the laws were different.

          • f. lusu

            Suzi Q 38- there is a youtube video that i think might be helpful for you when you talk to your sister. it’s by dr. xavier amador. ‘i am not sick,i don’t need help’.

          • Suzi Q 38

            Thank You!

  • DavidBehar

    Dr. Frank, a left wing ideologue, still refuses to address the 2000 murders committed by paranoid schizophrenics. They kill 10% of the murder victims even in very low crime nations. They destroy the value of entire sections of neighborhoods. They destroy their families. This supercilious apologist for the freaks is too good to address the facts.

  • Arby

    I don’t understand how removing stigma towards the mentally ill equates to letting them live like feral animals (and I hardly find it compassionate letting them fend for themselves or enabling them to harm others). Our society stigmatizes them brutally right now and yet all of the problems you mention still exist. Jesus didn’t need to stigmatize lepers in order to heal them and we don’t have to either when treating the mentally ill.

  • Mike

    The Newtown shooter lived in his stay-at-home mother’s 1.6 million dollar house she got in the divorce settlement from her ex-husband, and she also received $289,800 a year in spousal support alone. Money, or lack thereof, had nothing to do with her son not receiving mental help.

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