The Reality of Mental Illness is Much More Than Stigma

 

The reality of mental illness is much more than stigma.

It was a simple enough exercise.  Take about 90 seconds and say how mental illness affected you or your family.  Do it in groups of six and when I say time is up - move on to the next person.  The exercise was suggested by a conference speaker who said a similar disclosure during an interview had given him cause for concern about stigma.  The setting was a psychiatry meeting focused on stigma and we had all spent the morning listening to presentations on the topic. 

I really don’t like any professional meeting that resembles an encounter group and think it should be actively discouraged.  I think most people are like me – they go to professional meetings to hear experts and passively absorb information.  Further - I had just commented on the psychodynamics of shame a few weeks ago in the seminar that I coteach and defined the emotion has origins in disclosing information that could be embarrassing or that others would potentially criticize you for.  Of the 5 other people at my table – I knew one professionally and had just met two.  I was the oldest person (by 30 years) and the only man.  When they asked for a volunteer to start – I volunteered.  I did not think there could be a more severe story, was thoroughly habituated to telling it over the past 50 years, and knew that 90 seconds was not nearly enough time to describe how bad it really was.  I was right on all three counts.

“When I was 15 – I went downstairs and found my father dead.  Sometime after that my mother began to have severe episodes of mania. She disrupted the entire town to the point where the police were called repeatedly.  After several police calls, she was taken to a state hospital where she usually spent a few months until she was stabilized and came home.  That usually happened around Christmas time.  I was the oldest of 5 children so I tried to keep things together.  One-time things got so bad my brother and I had to call the police ourselves and they came down and told us that we wanted her ‘locked up like a chicken in a chicken coop’. When I was a kid, I was not ashamed about the situation – I was pissed off.”

Time was up.  I was not anxious or angry about what I had just said – but realized it was a very sanitized version.   I did not describe the symptoms – extreme paranoia, irritability, impaired judgment, and anger.  The disruption usually involved telephone calls to public officials or the local radio station when she would announce her name and begin swearing at whoever was on the other end of the phone. At times she would get very angry and carry a knife around suggesting that we should stab her with it.  She would throw us out in the middle of winter.  We would come home from school and find that she had thrown all of our clothing out of an upstairs window and we had to pick it up off the ground.  We would find strangers at dinner or once in the bathtub.  At night when we were trying to sleep, she would play the stereo loudly all night long – usually Danny Davis and the Nashville Brass Christmas album – punctuated by screaming up the stairway at us.  Hard to get up and go to school the next day after one of those nights.

On a road trip – my wife and I stopped in to see her.  The floor in the house was covered in about 6 inches of debris (from emptied drawers and closets).  She would throw a dash of Galliano onto the plies. She was making bizarre statements while circling the mouth of a jar of peanut butter with a piece of celery and then throwing the molten peanut butter over her shoulder.  My wife was upset and had to leave. She sobbed for the next half hour as we travelled down the road telling me she was sorry for what I had to endure as a teenager.   

Even if I had time to describe this additional information, that only scratches the surface of my mother’s experience with severe mental illness and the impact on the family.  I could write a book about what happened.  I am including it here just to illustrate the severity of the problem. These symptoms typically lasted for many months and some eventually became chronic.  As a psychiatrist – I have no illusions that her symptoms were anything but the product of a severe mental illness that was not treated well.  Her primary care physicians at the time were using a combination of amitriptyline and chlordiazepoxide – medication that psychiatrists would not use – even back then.  She eventually had access to a psychiatrist and was given lithium but it was not very effective.   

Stigma was not the main problem.  The main problem is that when a person has a severe mental illness like my mother it disrupts the relationship you have with them, That disruption is more severe when you are a kid and can’t make sense of it. It can affect your development and self-image.  The broken relationship can be permanent.  It is more like grief and loss rather than stigma and shame.  After a while my mother was not the same person any more. I no longer recognized her.  I could not remember what she was like before the onset of severe bipolar disorder.  I don’t think anybody did.  It has a more severe impact on my mother than anybody – but the emotional and interpersonal impact on everybody else was undeniable. 

All of the discussions of psychiatric diagnosis and treatment do not touch on that.  The bizarre discussions of antipsychiatrists and philosophers don’t even come close.  If you are saying that my mother was not mentally ill or did not have a “natural kind” of illness – you do not know what you are talking about.   If you are suggesting that she needed “trauma informed care” – not much better.  The unexpected death of her 43-year-old husband was certainly stressful, but the expected reaction is not decades or severe bipolar disorder.  It is bereavement, a universal experience, and all that involves. The lack of psychiatric care early in the course of illness could certainly have been a factor.  Her care rarely involved any of the family.  I don’t think any of her physicians knew how severe that impact was.  Despite the fact that she lived in the state where Assertive Community Treatment was invented in the 1970s – it was a rural county and active outreach by cases managers was decades away. 

My mother’s siblings and parents were very supportive. It would have been very difficult to have made it through many of these episodes without them.  It took an emotional toll on all of them as they tried to reason with her and convince her to do the right thing – like curbing excessive spending and trying to get some sleep.  The female members of the family – my grandmother and aunt were much more effective than the men.  They were able to react at a level that was not strictly emotional.  The siblings who remained in town or returned also had a stabilizing effect.  She also had two supportive female neighbors who spent hours talking with her despite the obvious problems.  But despite all of those efforts my mother was never restored to her baseline – a goal I eventually adopted with every person I saw as a psychiatrist.    

What seems like a good interactive exercise to make a point about stigma is a very blunt instrument.  There is no doubt that some of the local officials discriminated against her (and us) because of the stigma of severe mental illness.  That was not close to universal by any means.  At a recent reunion I greeted a retired police officer who was very helpful to our family with his advice and reassurance.  He did everything possible to avoid conformations with my mother when she was confrontational.  I never got the chance to thank the women in our neighborhood who helped but did when I sought them out in a crisis.  

Stigma can be an important factor – but the take home message from this essay is that the overwhelming fact about severe mental illness is the illness itself.  It has a significant emotional impact on everyone.  It disrupts interpersonal relationships – some of them permanently.   Some of that can be grieving the loss of a person who is never coming back.  It produces progressive isolation and alienation of the person with the illness. It is used rhetorically at the political level - blaming people with mental illness for violence and other ills of society.  In the current context treatment resources are being removed at the same time and that is probably the biggest societal ill.

At the rhetorical level stigma is also confused or conflated with clinical psychiatry. The ultimate societal outcomes of stigma are labelling and stereotyping to define the socially undesirable group.  Much of the rhetoric aimed at psychiatry promotes this fallacy.  Psychiatry operates at the level of disease reality.  The same level that affected my mother and my family.         

The reality of mental illness is much more than stigma.

It was a simple enough exercise.  Take about 90 seconds and say how mental illness affected you or your family.  Do it in groups of six and when I say time is up - move on to the next person.  The exercise was suggested by a conference speaker who said a similar disclosure during an interview had given him cause for concern.  The setting was a psychiatry meeting focused on stigma and we had all spent the morning listening to presentations on the topic. 

I really don’t like any professional meeting that resembles an encounter group and think it should be actively discouraged.  I think most people are like me – they go to professional meetings to hear experts and passively absorb information.  Further - I had just commented on the psychodynamics of shame a few weeks ago in the seminar that I coteach and defined the emotion has origins in disclosing information that could be embarrassing or that others would potentially criticize you for.  Of the 5 other people at my table – I knew one professionally and had just met two.  I was the oldest person (by 30 years) and the only man.  When they asked for a volunteer to start – I volunteered.  I did not think there could be a more severe story, was thoroughly habituated to telling it over the past 50 years, and knew that 90 seconds was not nearly enough time to describe how bad it really was.  I was right on all three counts.

“When I was 15 – I went downstairs and found my father dead.  Sometime after that my mother began to have severe episodes of mania. She disrupted the entire town to the point where the police were called repeatedly.  After several police calls, she was taken to a state hospital where she usually spent a few months until she was stabilized and came home.  That usually happened around Christmas time.  I was the oldest of 5 children so I tried to keep things together.  One-time things got so bad my brother and I had to call the police ourselves and they came down and told us that we wanted her ‘locked up like a chicken in a chicken coop’. When I was a kid, I was not ashamed about the situation – I was pissed off.”

Time was up.  I was not anxious or angry about what I had just said – but realized it was a very sanitized version.   I did not describe the symptoms – extreme paranoia, irritability, impaired judgment, and anger.  The disruption usually involved telephone calls to public officials or the local radio station when she would announce her name and begin swearing at whoever was on the other end of the phone. At times she would get very angry and carry a knife around suggesting that we should stab her with it.  She would throw us out in the middle of winter.  We would come home from school and find that she had thrown all of our clothing out of an upstairs window and we had to pick it up off the ground.  We would find strangers at dinner or once in the bathtub.  At night when we were trying to sleep, she would play the stereo loudly all night long – usually Danny Davis and the Nashville Brass Christmas album – punctuated by screaming up the stairway at us.  That could happen for days or weeks at a time.  Hard to get up and go to school the next day after one of those nights.

On a road trip – my wife and I stopped in to see her.  The floor in the house was covered in about 6 inches of debris (from emptied drawers and closets).  She would throw a das of Galliano onto the plies. She was making bizarre statements while circling the mouth of a jar of peanut butter with a piece of celery and then throwing the molten peanut butter over her shoulder.  My wife was upset and had to leave. She sobbed for the next half hour as we travelled down the road telling me she was sorry for what I had to endure as a teenager.   

Even if I had time to describe this additional information, that only scratches the surface of my mother’s experience with severe mental illness and the impact on the family.  I could write a book about what happened.  I am including it here just to illustrate the severity of the problem. These symptoms typically lasted for many months and some eventually became chronic.  As a psychiatrist – I have no illusions that her symptoms were anything but the product of a severe mental illness that was typically not treated well.  Her primary care physicians at the time were typically using a combination of amitriptyline and chlordiazepoxide – medication that psychiatrists would typically not use – even back then.  When she eventually had access to a psychiatrist and was given lithium but it was not very effective.   

Stigma was not the main problem.  The main problem is that when a person has a severe mental illness like my mother it disrupts the relationship you have with them, That disruption is more severe when you are a kid and can’t make sense of it. It can affect your development and self-image.  The broken relationship can be permanent.  It is more like grief and loss rather than stigma and shame.  After a while my mother was not the same person any more. I no longer recognized her.  I could not remember what she was like before the onset of severe bipolar disorder.  I don’t think anybody did.  It has a more severe impact on my mother than anybody – but the emotional and interpersonal impact on everybody else was undeniable. 

All of the discussions of psychiatric diagnosis and treatment do not touch on that.  The bizarre discussions of antipsychiatrists and philosophers don’t even come close.  If you are saying that my mother was not mentally ill or did not have a “natural kind” of illness – you do not know what you are talking about.   If you are suggesting that she needed “trauma informed care” – not much better.  The unexpected death of her 43-year-old husband was certainly stressful, but the expected reaction is not decades of severe bipolar disorder.  It is bereavement, a universal experience, and all that involves. The lack of psychiatric care early in the course of illness could certainly have been a factor.  Her care rarely involved any of the family.  I don’t think any of her physicians knew how severe that impact was.  Despite the fact that she lived in the state where Assertive Community Treatment was invented in the 1970s – it was a rural county and active outreach by cases managers was decades away. 

My mother’s siblings and parents were very supportive. It would have been very difficult to have made it through many of these episodes without them.  It took an emotional toll on all of them as they tried to reason with her and convince her to do the right thing – like curbing excessive spending and trying to get some sleep.  The female members of the family – my grandmother and aunt were much more effective than the men.  They were able to react at a level that was not strictly emotional.  The siblings who remained in town or returned also had a stabilizing effect.  She also had two supportive female neighbors who spent hours talking with her despite the obvious problems.  But despite all of those efforts my mother was never restored to her baseline – a goal I eventually adopted with every person I saw as a psychiatrist.    

What seems like a good interactive exercise to make a point about stigma is a very blunt instrument.  There is no doubt that some of the local officials discriminated against her (and us) because of the stigma of severe mental illness.  That was not close to universal by any means.  At a recent reunion I greeted a retired police officer who was very helpful to our family with his advice and reassurance.  He did everything possible to avoid conformations with my mother when she was confrontational.  I never got the chance to thank the women in our neighborhood who helped but did when I sought them out in a crisis.  

Stigma can be an important factor – but the take home message from this essay is that the overwhelming fact about severe mental illness is the illness itself.  It has a significant emotional impact on everyone.  It disrupts interpersonal relationships – some of them permanently.   Some of that can be grieving the loss of a person who is never coming back.  It produces progressive isolation and alienation of the person with the illness. It is used rhetorically at the political level - blaming people with mental illness for violence and other ills of society.  In the current context treatment resources are being removed at the same time and that is probably the biggest societal ill.

At the rhetorical level stigma is also confused or conflated with clinical psychiatry. The ultimate societal outcomes of stigma are labelling and stereotyping to define the socially undesirable group.  Much of the rhetoric aimed at psychiatry promotes this fallacy.  Psychiatry operates at the level of disease reality.  The same level that affected my mother and my family.         

The reality of mental illness is much more than stigma.  

 

George Dawson, MD, DFAPA.  

Supplementary 1:   I posted this about 10 years ago on stigma.  If you use the search box on the front page of this blog there are 15 or additional posts where I mention the term in one context or another.  Since then, the jargon has advanced to define separate types of stigma.  Per this CDC web page there are now three types with their suggestions for combating it.      

 

Mental health stigma can take many forms (CDC)

• Structural stigma, involving laws, regulations, and policies that can limit the rights of those with mental health conditions.3
• Public stigma, which include negative attitudes and beliefs from individuals or from larger groups towards people with mental health conditions, or their families or health care providers that care for them.3
• Self-stigma, which comes from within the person with a mental health condition.3 People living with a mental health condition may believe they are flawed or blame themselves for having the condition.4

These definitions leave out important dimensions.  For example – where are the insurance companies, managed care industry, pharmaceutical benefit managers, and governments that limit mental health coverage and treatment resources.  At the same conference I attended one of the advocates talked about the state government no longer funding an important clubhouse resource for people with mental illness. 

The public stigma is devoid of the politics that defines people with mental illnesses either as violent criminals or freeloaders getting benefits that they are entitled to. If you really want to cancel that stigma why not clearly identify where it comes from?

Self-stigma seems to be describing self-image, self, and self-esteem concepts that most psychotherapy providers learn how to address in that process.  

For all of these reasons the stigma seems to be a rhetorical stretch to me.  If you want to address these issues point to the source of the discrimination and don’t make it into a general societal issue.  It is a societal issue only at the level that society never confronts the real source of discrimination. 

Supplementary 2:  Self disclosure is generally discouraged in psychiatry.  If you are practicing it may lead to speculation about your personality, biases, or style of practice.  In the case of this exercise it was encouraged even though there were no assurances of confidentiality and no therapeutic intent.  It was clearly an exercise to illustrate a point that could have as easily been made with a thought experiment.  In this case my mother has been deceased for 22 years. My limited discussion of her illness is done here to illustrate the reality of severe bipolar disorder and the associated effects compared with the issue of stigma.