Anosognosia and Real Reform for Real Recovery
As the Treatment Advocacy Center States on their website: "Every one of us deserves and benefits from respect, hope, family support, overcoming past trauma and all the other experiences on SAMSHA’s list. However, proposing - among other guidelines - that an "essential, common experience" of recovery is being “person-driven” is uninformed, unrealistic and a grave disservice to the estimated 3.3 million people in America currently living with untreated schizophrenia or severe bipolar disorder.
Individuals with untreated mental illnesses that have psychotic features have, by definition, lost touch with external reality. An estimated half of them don’t even recognize they have a condition from which they need to recover. Large numbers are tragically unable to direct even their own health, hygiene and self-preservation, much less their recovery. A “recovery support” strategy that ignores these clinical realities is discriminatory and blatantly ignores a population that is both entitled to advocacy and uniquely unable to advocate for itself."
Additionally, anosognosia is a critical, relevant, and prevalent feature of both brain disorders and recovery. Those that are afflicted by this lack of insight are especially vulnerable and unable to access these high ideals for recovery, as no acknowledgment of recovery as necessary can be made by people who suffer from anosognosia. This neurological syndrome must be incorporated in to any holistic list of 'principles of recovery' and addressed in any recovery plan.
Additionally, again as TAC states: "Factors like … accurate diagnosis, timely intervention, appropriate treatment, patient education, safe housing are nowhere to be found." True reform in this area of medicine is necessary, and the list above is where we should begin.
Colette Oesterle
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76 comments
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Ceejai
commented
I have a daughter with paranoid schizophrenia who refuses to go to a hospital or take medication, because according to her--- there is nothing wrong with her. To her the problem is me, because I am not helping her by gettting rid of the people "the voices" that are harassing her. She doesn't understand that I don't see the "so called grid" that she truly believes the government is tracking her. Please, do something that will help us to get the help "our" loved ones need to get better and have a productive life. Due to my daughter's lack of insight to her illness, she has been homeless, without food and too afraid to let anyone know where she was located. She walked out of her apartment in the middle of December ----because she believed the people who were living in the apartment above her had a "meduca machine" that could read her mind. She walked out and never went back to the apartment again---she was too afraid!!!!
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Margaret Chapman
commented
I am the Executive Director of NAMI Dauphin County also a Family to Family teacher. All Family to Family teacher educate the families of mental illness. It appears we should now be teaching some professionals the facts, especially about anosognosia. A few days ago I experienced an incident where a 68 year old women with schizophrenia was discharged from a psychiatric hospital because the Doctor said she was stable, despite the fact that her family disagreed. Approximately forty-five minutes after discharge this women was walking on her hands and knees on the highway, the police saw her, drove her to the ER and she was re-hospitalized. This women could have been killed. This is just one of many incidents that happen throughout this country every day. SAMSA, anosognosia is real, not everyone with a mental illness has this diagnosis.You need to read the facts that TAC has researched and help our severe mentally ill citizens.
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Joan Johnston
commented
My daughter has been ill since she was 14. She is now 30( and doing better). I also teach the Family -2-Family class for NAMI. WE families do educate ourselves. -- and we KNOW when we need help with our loved one---who KNOW that they are not ill-- ( this is symptom of their illness).-- PLEASE learn what the word anosognosia means. So, they will NOT go in voluntarily-- why should they when they believe-- KNOW-- that they are not ill. We need help, getting our loved ones treatment, when they are unable to care for themselves, and make appropriate decisions on their own due to the biological illness of their brain.Having to wait till they harm themselves, or harm someone else-- is not acceptable. Please listen to the Treatment Advocacy Center. They are our hope and advocates. Please consult with Dr. Xavier Amador. These are educated sources, that will help YOU understand what so many of us have experienced. Thank-you for your time.
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Joan Johnston
commented
My daughter has been ill since she was 14. She is now 30( and doing better). I also teach the Family -2-Family class for NAMI. WE families do educate ourselves. -- and we KNOW when we need help with our loved one---who KNOW that they are not ill-- ( this is symptom of their illness).-- PLEASE learn what the word anosognosia means. So, they will NOT go in voluntarily-- why should they when they believe-- KNOW-- that they are not ill. We need help, getting our loved ones treatment, when they are unable to care for themselves, and make appropriate decisions on their own due to the biological illness of their brain.Having to wait till they harm themselves, or harm someone else-- is not acceptable. Please listen to the Treatment Advocacy Center. They are our hope and advocates. Please consult with Dr. Xavier Amador. These are educated sources, that will help YOU understand what so many of us have experienced. Thank-you for your time.
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Linda
commented
The statement TAC is making is so very true. My son can't help himself and you won't let me help him, nor will you help him. Please listen to TAC...they speak for so many of us. For 23 years my son's life has been wasted. Recognize that he can't help himself....and it's cruel for you to not help him.
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Ruth Fisher
commented
My son has been hallucinating for over 10 years. I have never been able to obtain treatment for him. When he first started hallucinating, I was told by a mental health worker that he would never be treated in Pennsylvania because in Pennsylvania a 14-year-old girl was given permission to refuse treatment by the Pennsylvania Supreme Court.
I took my son to New York, where they have Kendra's Law; however, he was not deemed to be a danger to self or others. I did succeed in having him hospitalized for two weeks; however, every time he was offered treatment, he was told "You have the right to refuse medication." He got the message. After two expensive, wasted weeks, my son was released without treatment.
Next, psychiatric social workers were sent to my home to tell my son repeatedly that he had the right to refuse treatment. I nearly fainted when I saw the bill. What an unforgiveable waste of taxpayer's money!
Finally, on the suggestion of the psychiatrist at the psychiatric center, I moved to Arizona, which has another criterion--persistently or acutely disabled--for mandatory treatment. I moved, but my son is too far gone because of the criminal negligence on the state of Pennsylvania. He refuses to come here--even to visit.
My son's life has no quality. He no longer bathes or cuts his hair or brushes his teeth. He eats junk food. His living quarters are such that one spark and he will never get out alive. He wanders the streets cursing and hallucinating. He has not been to see a doctor or a dentist for about 11-12 years. My daughter, a graduate of Harvard Law School, tells me I must accept the unendurable--that we will never obtain treatment for my son. She does not tell me how to endure the unendurable.
I would like for someone to show me where in the New Testament Jesus said, "You have the right to refuse treatment." No. He was a compassionate individual. He saw what needed to be done, and he did it no matter how distasteful it was.
Our founding fathers never wanted this corruption of their notion of liberty. Benjamin Franklin, an intelligent individual, opened one of the first mental institutions in order to get the mentally ill off the streets and out of prison. Thomas Jefferson, another intelligent individual, committed his mentally ill son-in-law to an asylum where he would receive the custodial care he required.
I worked as an editor at a university press for 10 years, and I can attest to the fact that psychologists and social workers are not the brightest bulbs on the string. And now we have a whole generation who have been taught that mental illness is a choice--not a serious brain disorder. And that is why we have more bizarre, horrendous murders being committed by "troubled" people. Why we have school shootings, which were unheard of before the onset of "enlightened" treatment of mental illness during the 1960s and 1970s.
We used to joke about the mentally ill taking over the asylum. Now they have, and the asylum is the entire country.
The first time I heard--in a Psychology 101 class--that mentally ill people should be given the choice to be treated or not, I thought, "No one is stupid enough to believe that." I am still stunned at my overestimate of the intelligence of the American people.
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Beta Sheep
commented
My experience with the mental health system is that psychiatrists and other mental health workers were never upfront about my real diagnosis-- a personality disorder that they had (oddly) placed on Axis I. I had to find about it from documents they filed with a federal Administrative Law Judge. Also in this ALJ filing they mentioned "patient shows no response to medication."
So, how can I have insight into what's wrong with me, if they don't share this information?
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Irina Koltoniuc
commented
I would like to ask- why member of my family does not deserve normal civilized treatment?
My son is mentally ill and does not recognized it. Nothing makes him to understand this and take medications (28 admissions, few times in prison); so what more can be done? He must receive professional services, even he does not recognize the need for. Who are those criminals who makes inhuman decisions?
If he would be sick with any other illness he would be treated appropriately. About 20 million Americans are suffering every moment (mentally ill and their families and loved ones). We must be helped!!!
SAMHSA must change their statement, they must to understand reality.
They, our loved one are ill, they need help. -
Allison Craig
commented
As a mental health case manager at a homeless shelter, I've seen a surprisingly number of clients who I would say have anosognosia (yes it does exhist people). I have also seen people with this become court ordered to treatment and return from mental health hospitals with enough insight to obtain housing and the ability to go through the MANY steps it takes to go from homeless to housed. It always amazes me that I can witness a person sleep under a bridge for months and months (because they believe the FBI is following them) and there is no course I can take to alieviate their pain. I cannot, through talk therapy or counseling as my only options, help them relieaze they are having delusions. They need medication and we need to help them access it.
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Nancy Wrona
commented
SAMHSA you know we are out here....our voices need to be heard in order for our loved ones with anosognosia (lack of insight) receive THEIR RIGHT to humane and professional services and treatment in which they are unable to recognize their need for. SAMHSA it's time to hear OUR VOICES!
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Jenny
commented
Anosognosia is caused by many of their treatments. It's not really possible to have a lot of insight into your health, or appearance, or really much of anything if you have brain damage caused by electroshock or drugs.
And if there was such a thing as a mental "illness" it would not require the show of hands at meetings to vote it into existence. "Who thinks schizophrenia exists, hands up?" How a possible problem is defined affects how, or if, it will be solved. So saying something is schizophrenia leads to drugs, but calling the same thing trauma might lead to EMDR or therapy.
Anyway, I oppose the idea that people labeled as schizophrenia need some kind of forced intervention. Their drug treatments simply do not work, and it is criminal that they are continually engaged. There's nothing beneficial about being labeled crazy after being traumatized, then being given a movement disorder along with your existing problems, and then being re-traumatized when you complain about the movement disorder. And then being shocked when you are labeled "treatment resistant." This system breeds trauma and dependence, and is not worth embracing in the least.
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Gloria Dialectic
commented
All talk of recovery is pointless when anosognosia is ignored. Persons with illness need and deserve treatment, but they cannot get it when their illness prevents self-recognition. Too often they are doomed to pain and wasted potential.
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psyisascam
commented
recovery is too late . by the time someone is forced to go to a shrink its to late. prevention is the answer . look for external causes.
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spiritual_emergency
commented
J. Dosick: Recovery is not about forced 'treatment' with powerful medications. It goes much, much further, and supporters are misusing this and other forums to address a small subset of people they deem as dangerous and never to recover. We don't need more people living under threat of force.
I'm picking on you J. Dosick and I hope you'll forgive me. You and I are probably people who could be called part of the "recovery movement". We can't deny this concept called recovery because it has moved through us, claimed us, and changed us.
I am someone who is supposed to be a "schizophrenic". I have a birth father who was in and out of psychiatric hospitals for reasons unknown and I have a child who has also been diagnosed as "bipolar/schizoaffective". In spite of wherever I came from and whatever I got as a genetic gift, I am recovered.
I have never been medicated. I have never been hospitalized. I have never received formal therapy. I am well. I am recovered. I cannot deny recovery because it is an integral part of my own life experience. I am painfully aware of the places in others where their opportunities for recovery are shut down and denied.
However, I can also hear the pain of the people who have spoken in this thread. It would seem we are at odds. Much earlier, the individual who opened the comment stated: "No person who is mentally ill belongs in a recovery program." It was as if we who have recovered had somehow become the enemy for doing what they wanted their own loved one to be able to do.
I objected to that statement because I've spoken to far too many "schizophrenics" who were utterly demoralised and stripped clean of hope by those kinds of statements.
I don't like TAC's policies. I'm no fan of Torrey. Jaffe and I have butted heads in a number of places and will likely do so again; I have never attended a meeting of NAMI... but I do hear the pain of these people who are trying to speak for the people they love. I understand that they feel hopeless and are frightened too. I understand that they are looking for answers, just as many of the rest of us might.
If nothing else, I would like to acknowledge that. They are as desperate to be heard and acknowledged as those of us in the recovery movement need to be heard and acknowledged. They're not all bad parents, they're not all misinformed -- they're scared, they're overwhelmed, and they're hurting too.
I want to believe that those of us who have undergone "extreme states", those of us who have been "demonized", those of us who have been silenced, those of us who have been ignored and minimized... that we have it within us to hear ALL the voices.
I want to believe that these two groups that operate from very different values but with similar experiences and fears could find a way to work together as opposed to a way of working apart. I feel that could be a difficult but valuable conversation because I think we could be stronger if we could find a way to respect the differences and honor the places where we are the same.
I know that's not likely to increase my popularity on either side of the fence.
May we all be well.
~ Namaste
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Loretta
commented
I wonder how many people who believe anosognosia is only a theory have close relatives who suffer from severe mental illness. Countless family members of those who so suffer can tell you that it does. Countless people who suffer from mental illness and have been given the benefit of treatment when they could not ask for it themselves can tell you how once they couldn't help themselves and now they understand how sick they were and are glad that others helped them when the could not help themselves. How many years was the connection between smoking and cancer known but not proven? How many were hurt during those years while people sat on the fence waiting for proof? It's time to give the severely mentally ill the dignity they deserve, a chance at health and wholeness, a chance to have clear enough thinking so they can make their own decisions. To deny that anosognosia exists is to deny those who so suffer the right to dignity, the right to health, the right to life. To deny that anosognosia exists is to take away freedom, not to give it to someone who is ill. I can't imagine why anyone would think that anyone would choose to live the way the severely mentally ill live. Would any of you who believe anosognosia is not proven chose to live in the streets, choose to cut themselves off from caring friends and family? To really believe that someone would rationally chose that for themselves, NOW THAT'S CRAZY!
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westgate
commented
to apply a neurological term, anosognosia, to persons diagnosed with mental illness is poor science. I have never seen scientific evidence verifying the application of such a concept to such a large number of people is wrong. To say "those afflicted by this lack of insight are...unable to access these higher ideals of recovery," without proof unduly removes hope and would lead to massive forced treatment. I find that most people with mental health issues, moderate or severe, understand the need to do work towards recovery when they are given hope told that they too can lead a fulfilling life.
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Fernandria
commented
I have been a homeless outreach worker. I can tell you that, many if not most homeless who avoid shelters and live on the streets, have had contact with mental health establishment. As a result are more disabled from the treatments than from the illness.
Threat of forced treatments is what keeps people from seeking treatments.
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J. Dosick
commented
Recovery is not about forced 'treatment' with powerful medications. It goes much, much further, and supporters are misusing this and other forums to address a small subset of people they deem as dangerous and never to recover. We don't need more people living under threat of force.
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Ivy S. Minely, Esq.
commented
This is absolutely essential!!
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Bonnie Neighbour
commented
hmmmm, where is the true, scientific research backing up The idea of anosognosia? And who coined the term "anosognosia" for that condition? Do a little research and you'll find the answers to those two questions lead to one organization with a very specific political agenda. Let's look at human lives and true facts instead of at political agendas. The agenda behind this comment is to require people who have been diagnosed to receive treatment based on the diagnosis, whether they want it, or see the need for it themselves.
I have met a lot of people with the diagnoses of either schizophrenia or bipolar and I have not met one who didn't freely admit that there was something that got in the way of his or her life. I have met many who refuse to accept the label imposed upon them by a diagnosis. I think the answer may be that we need to actually look at individuals and not at the metaphorical box of "schizophrenics" or "bipolars" who all must be the same because they share the same diagnosis.
Real Reform for Real Recovery looks at individuals.... human beings.... people deserving of dignity..... people who MUST have a say in their own illness/wellness journey! Individuals have the right and the drive to make their own life choices .... even if you disagree with those choices.
