My Sojourn through Bipolar Illness – Stigma

I have often felt that the stigma associated with bipolar illness is as big if not bigger (twice as big) as dealing with the illness itself.  Every time there is a school shooting or a gun incident or a drug cartel development that involves an unstable person with mood issues, all parties with a behavioral health diagnosis suffer.  The emphasis in society rarely is on developing preventive care for people with behavioral care diagnoses.  Admitting such people to jails appears to be more of the status quo in the years following the closing of many State-run facilities.  Undoubtedly, there has been a cost savings with the closing of hospitals across the United States but the flip side of this is that many people with behavioral health diagnoses end up in jail or homeless on the streets.  Too often people may encounter the fact that there are no beds available when they go to be evaluated for admission to a behavioral health facility.

While I am not an expert in addiction issues at all, I feel that the opiod epidemic of the last several years is evidence of the fact that our behavioral health and addiction facilities are lacking in funding and in expertise while the world is lacking in understanding and compassion.  The stigma associated with having an addiction or an addiction-based personality is a huge factor I believe in addressing this crisis.  What is evident now more than ever is that addiction issues (and behavioral health issues) do not discriminate based on race or socioeconomic stature or religion or any other factors.

I have encountered stigma in the workplace, during the job interview process, in the neighborhood, in the world of health insurance, and just about in every facet of society.  I have often heard of the comparison of behavioral health issues to diabetes.  Would you think less of a person who takes insulin daily? Probably not.  But would you think less of a person taking psychotropic drugs?   Today, the typical answer to this question is probably so.  Would you think less of a person who has exited the opiod epidemic and is actively addressing addiction tendencies?  Hopefully the answer is we are learning to be proud of that person for reaching out and for getting help with a problem that is real across all sectors of American society.

The stigma issue at least in behavioral health tends to feed on itself.  Because the stigma is high with regard to behavioral health diagnoses, I find it hard to share my diagnosis and my daily troubles with others.  This need for secrecy or keeping the diagnosis story a secret in turn creates undertones of distrust or lack of trust and/or continuing questions.  If I share my story with person x, will he or she keep that story confidential or not?  What will be the fallout if my diagnosis is shared in the neighborhood or in the workplace or at my daughter’s school?  These are serious questions regarding a very serious topic.

Mostly I have found that people outside my family circle are not at all aware of or supportive of mental illness concerns.  The education that they receive typically comes through the news where the typical story involves a young teen or twenty-something who is disturbed at home, who may have sought psychiatric care or may not have, and who decides to engage in some sort of heinous premeditated shooting rampage.  Unfortunately these stories of misunderstood teens and young people on a death rampage have become more of a norm in our society in the last ten to fifteen years than anyone would care to admit.

To me there are very clear steps that society should be taking to counter-act these potentially preventable heinous acts of violence. 

These include:

1) Background checks for the purchase of guns and other weapons such that people with a history of mental illness may not purchase or own a gun or weapon under any circumstances.  This includes background checks for all types of gun sales and gun ownership.

2) Some form of alert that can be provided by a mental health worker if a particular patient is in distress and appears to be a danger to himself and others, particularly to others.  Right now, most privacy laws do not allow for that disclosure given doctor-patient confidentiality laws.

3) A clearer understanding for Crisis Intervention workers and teams including training in mental health issues.  First Responders need to be armed with a greater understanding of when a crisis event is a dangerous event for others versus when a crisis event creates danger for only the patient and the patient’s life.

4) Funding and payment to Crisis Intervention workers for this training.

5) Funding and training to mental health workers to help distinguish patients who pose a threat to society as compared to patients who are experiencing a threat to themselves.    

6) Additional early intervention work for teens in inner city environments with behavioral health concerns to get them off the streets and out of association with gangs and gang behaviors with the end game being to treat these kids for psychiatric issues before they get a criminal record and are incarcerated. 

This requires that we look at the cost-benefit of treating at-risk teens for behavioral health concerns versus the current pattern of enabling criminal activity among teens by not providing the behavioral health care that they need until after they are in jails.  In my opinion, society needs to accept the cost of working with at-risk teens on behavioral health issues so as to avoid the huge cost of incarcerating a large and growing sub-population of mentally disturbed people with a history of criminal behavior in our inner cities and towns.    

If we are going to progress past the stigma of mental illness diagnoses, it may be necessary to give up some of our freedoms.  If we are going to differentiate between a mental health event that endangers the patient versus a mental health event that endangers community or society, we people with behavioral health diagnoses need to be willing to give up some of our freedom.  To me giving up freedom is agreeing to sign off on background checks for guns and other weapons as well as amending doctor-patient confidentiality laws if there is clear evidence or behavioral propensity of a danger involving the greater community.  Clearly if we are going to expect care-givers and first-responders to bear the responsibility of determining if the event scope is patient-only versus community-reaching, we will need to provide topnotch education to both mental healthcare providers and First Responders.  Both groups need to be well-versed in signs that distinguish when the patient is a threat to self but more importantly a threat to others.   Both care-givers and first-responders need to be armed with an understanding of how these two scenarios differ and how they are the same with the end goal being the care for human life – the life of a disturbed teen but also the lives of those in community with this teen.

Stigma delay or not?

What strikes me as poignant is that the stigma/judgment/prejudice associated with mental illness is less visible or more delayed while the stigma/judgment/prejudice associated with darker skin seems more immediate.  To the average Joe, I look like a white housewife with no major troubles.  It is not until my mental health behavior gets in the way that someone might recognize me as having a behavioral health disorder and therefore might judge me as less than.  Behavioral health stigma is not generally associated with the way a person looks right off the bat unless that person shares that information upfront.  Whereas, with black and brown skinned people, it seems to me (from the outside looking in) there may be no such “delay” or “invisibility.” Someone with brown or black skin appears to be judged even before any behavioral questions good or bad emerge just because of how he or she looks on the spectrum of dark skin to light skin.

I hope I have not offended anyone of color with this comparison or that you think I think I can comprehend what it is like to be black or brown and to be judged by your appearance alone. 

I do not make the comparison to mental health above because I know how it feels to be judged by the color of my skin.  I don’t.  I have not experienced that.  But I would like someone of color to know that I do understand very well what it is like to be judged for something I was just born with. Perhaps I am not at liberty to make that comparison because I am not dark-skinned.  But I do think part of the solution in the Black Lives Matter movement is that we become unafraid to talk about our perceptions of race and racial stigma.

From here the conversation atrophies into the question: why make a comparison between skin color and a disability?  It is not a good comparison to make.  Yes, I agree a disability is not the same as skin color.  The whole “Black is Beautiful” movement underscores that. 

Then the conversation atrophies again, as a person with a disability, I am supposed to think of myself as a person WITH bipolar illness not that I AM bipolar.  I am not my illness.  I am supposed to not let that “label” define me.  Should we in turn say someone of African American heritage is a person with black skin rather that black?  Probably not.  For the behavioral health person, we typically don’t want labels to define us.  But for those with black and brown skin, the difference may be in embracing that difference and celebrating it along the lines of “Black (or Brown) is Beautiful” from the 1960s or 1970s.

Somewhere also in the midst of this conversation is the reality that up until the 1950s people with behavioral health problems were locked up in institutions largely for life.  Families sent them away to institutions where they were often forgotten and buried as a number in a mass cemetery for the mentally ill rather than by name.

So all in all, the parallel between having a disability and having darker skin has limits.  Perhaps this is just an ice breaker into a conversation of what can be and what we want to be different for those experiencing racial pain and stigma and those experiencing mental pain and stigma.

My Sojourn through Bipolar Illness

This was going to be the cover of my book: My Sojourn through Bipolar Illness – Safety, Society, Stigma and Stability. Thought I’d share it since I am now blogging instead of seeking a publisher. For me the painting captures the feeling of being stigmatized by mental illness as well as the simultaneous goal of keeping your eyes on the prize (the target) despite set-backs big and small.

My Sojourn through Bipolar Illness – Imprinting

What I took away from this first break experience during my Senior winter at Ivy College is that being mentally ill meant I was first a criminal and second a person. I know that first responders were doing their jobs to watch out for the safety of all those who were boarding the plane and/or in the airport. But that experience told me: “You are a criminal. You were trying to bomb the plane. You are guilty of anything and everything until proven innocent. You need to be handcuffed. You do not have the right to have fears much less to express them. You do not have the right to have perceptions that are not 100 percent clear. You are a danger to others around you and you need to be locked up.”

My first episode imprinted me for the rest of my life. For years, I would try to escape the label of criminal that had been imposed on me by circumstance and happenstance. But try as I might, I still felt like I was a criminal every time I had a subsequent break-through episode no matter how big or how small.

In hindsight, things could have unfolded quite differently. I could have reported to the school clinic that I was having anxiety about traveling to Chicago and had been having some trouble sleeping. I could have gone into the clinic for a routine evaluation and perhaps been put on lithium or some other drug for bipolar. But sadly, that is not the way my first episode and subsequent diagnosis of bipolar went. I remember to this day looking at those pictures on the wall in the police station and thinking they must be looking for me as “most wanted.” Being mentally ill simply meant I was a criminal.

I will talk later on about stigma and first responders — including the importance of training first responders how to recognize the signs if a person is a danger to him or herself or whether the person is also a danger to those around him or her. But that discussion about stigma and first responder training is for another day.

Managing the Stigma of Bipolar Illness

I am interested in writing about my experiences managing bipolar illness which was diagnosed in 1985 while a Senior at Ivy League College (name not listed). This is almost 35 years ago and also accounts for almost two thirds of my life. I believe that stigma is the primary issue I have had to deal with when managing through this bipolar illness. Similar stigma issues may exist for other mental illness diagnoses. For me the stigma has been at least 50% of the battle. If this story sounds like something you would be interested in hearing more about, please let me know. I am at the juncture now of trying to determine whether to share intimate details about my health and my life in order to get my story out there and to connect with others through story-telling who may share a bipolar diagnosis or know someone who does.