Mental Health Stigma: More Than Just a Matter of Diagnosis

Part I: The Delicate Topic of Stigma, Labeling, and the Search for the Common Good

In March of this year, Leah Harris published a wonderfully thought-provoking article entitled Why We Must Strike the Terms High-Functioning and Low-Functioning from Our Vocabulary.  It clearly described both the limitations and potential pitfalls associated with labeling, and how this can lead to long-term negative outcomes.  Often in my office, I am asked to provide such labels, especially for children who have been diagnosed on the autism spectrum, as parents try to gain some understanding of what to expect from them now and in the future.  But as noted in the article, I feel that the question is fraught with complications, the first of which being that we all operate on so many different dimensions that it is impossible (and incorrect) to simply categorize a person in one term.  Human beings can’t, and shouldn’t be equated to a simple descriptor, as we are a constellation of so many parts that make up who we are becoming.  I appreciate Ms. Harris taking the time to flesh out all the different ways that functioning designations such as these can go wrong.

But since this article was published, I have found myself coming back to fundamental questions which still loom about the topic of labeling and stigma. The first is the topic of labeling itself, and the regularly asserted notion that labeling is bad and automatically results in stigma.  I think that this belief, too, has its own pitfalls.  Historically, there have been reasonable reasons to label particular behaviors, whether for the purposes of communicating more efficiently/effectively or providing an ability to research a particular trend.  Not all labeling is sinister by nature.  Some actually has, and continues to have good intent and outcomes.  Just as words and weapons can be used for noble and abusive means, so labeling a particular behavior or conglomeration of symptoms can be done for good reasons.  I realize that many reading this who have experienced labeling in a negative way may feel angry at this suggestion, but I think it is important to recognize this reality as it exists.

One of the benefits to providing a label for symptoms that are significantly distressing or impairing is simply to designate that there is a clear need for assistance. Leah and others in her article embrace the idea of the neurodiversity movement, where all experiences and behaviors are seen as part of natural, variation in human genome and not abnormal or impairing circumstances.  In theory, this sounds like a kinder, gentler way of perceiving what happens to all of us, and of course, all that we do is part of the variation of the human experience, no matter how far off the “normal” or “healthy” pathway it may be perceived to be.

But there is at least one serious hiccup to this movement, in addition to my concerns previously expressed about how this provides a confusing landscape for teaching what is healthy and/or normal .  It is subject of how we know who needs assistance and who does not, and then the authorization to provide resources for those who do.  This was passionately, even angrily, articulated by the first commenter on Leah’s article, who stated:

The neurodiversity movement is hurting those of us who genuinely are debilitated due to our autism. Do you even care about that? Not to mention that those of us who are debilitated by our autism need to be able to use the descriptor “low-functioning” so that we can get the supports we need. Without that descriptor, there’s no reason for anyone to think we need any help or support at all. Again, do you care about that? It seems to me like all you care about are autistic people who aren’t debilitated and who can function independently. Well, from an autistic woman who struggles daily with social anxiety, depression, hypochondria, and general anxiety disorder (and yes, all of those conditions were professionally diagnosed), and who can barely work as a result of all of those conditions, I’m not going to stand for that.

It is a serious concern. There are many people who desperately need and desire help for conditions that have nothing to do with stigma or labeling, or cannot be accounted for by the social model of disability.  There is no doubt that societal and cultural factors bear much responsibility for what happens to individual human beings.  But I think it is stretch to state that these factors are the main contributing factor to disability, as all societies see similar problems even if to varying degrees.  I see this most in the families I work with who have a child diagnosed with an autism spectrum (ASD), whose children often struggle significantly with a variety of basic skills that impair daily functioning even when all available resources and consideration are provided.  Along the issue of stigma, too, it is interesting to note (for better or worse) that more parents of today (who come for an evaluation regarding ASD) are surprised, and even frustrated, when the diagnosis is not given than when it is.  This in itself, though, is a discussion for a later time.

But the other position that often gets promulgated unfairly is that stigma is a one-way street. So frequently I see articles that suggest that a label given = stigma.  Although I again realize this is a delicate, emotional subject, I think that simply suggesting that labels (and those that use them) are responsible for stigma is like suggesting a clinician providing a treatment is always responsible for negative outcomes.  Certainly, treatments can be inappropriate, misused, or altogether ineffective, but we all understand that there is a bidirectional relationship that exists.  Simply put, for every action, there is a reaction.

The same applies with labeling. I know many who have received a diagnosis, and have seen it as an empowering, freeing idea, in that they no longer feel solely responsible for their mistakes or struggles.  I know parents who have felt relief in understanding that a child’s problem-solving skills or even overall IQ was less-developed than his or her peers, as it helps validate struggles about why repeated instruction of a various nature was not having the same impact as it did with another one of their children.  I believe that what we do with the labels given is just as important, or sometimes even more important, than the label itself.

Recently, a family friend by the name of Michelle Krack wrote a memoir of her struggle with Bipolar Disorder, aptly labeled Michelle May Crack.  I admire her greatly for telling her story of intense struggle and resiliency, especially as it included difficult details about her childhood that most would not have known.  On the inside of the book I purchased from her, she inscribed to me “Make a Difference.  Beat the Stigma” as she has certainly dealt with much of it over her life.  When I read this, something about the statement struck me, immediately arousing the question, “How do we stop the stigma?” as it certainly wasn’t just the label for her that led to many problems.  It also led me to consider just how we often speak of stigma, as if it is almost a living, breathing, organism itself that flows throughout our land.  But of course, we all know that stigma is really an intricate composite of individual experiences and reactions over time, each that presses an individual into difficult, uncomfortable decisions and circumstances.  Ultimately, it seems that stigma manifests itself most when fear and embarrassment (understandably) leads to a condition of low worth and feelings of powerlessness that persist over time.

But in order to counteract stigma both on an individual and societal level, we have to be honest about all of the parts and people involved in its creation. And that’s where I hope this article leaves off, and encourages many others to begin.  Otherwise, I worry that the topic of stigma and labeling risks becoming another sound off, and not a truly informative and dynamic conversation about the all the factors that should promote labeling when it is needed and necessary, and either remove, neutralize, or counteract it when labels becomes detrimental.  It seems we should spend just as much time identifying, and teaching, factors that promote resiliency in the face of labeling as we should in working to change society’s perceptions of those who have been given the labels themselves.  Certainly there are many pieces in this human puzzle, all of which play an integral role in perpetuating the common good.

I will end with Leah’s conclusion. She said:

Imagine what would happen if we began to have some respect for the varied ways that people do their best to adapt and function, sometimes with amazing creativity, in a deeply dysfunctional world? I would like to see us cease to blame or shame individuals for their level of functioning in society, and instead work to create a more equitable and just world that meets our basic human needs and human rights.

It is a beautiful vision, seemingly only made more beautiful by one additional idea:

Imagine, too, that all of us could better understand what role we played in our struggles and shame (and that of others), and that in truly acknowledging what this role might be, we would valiantly strive to overcome internal obstacles in seeking out the best possible alternatives for ourselves and others, even if many did not agree with, or value us, along the way.

What a truly beautiful world it would be!

Part II: Perceptions of Public and Personal Stigma

In 2014, a couple of researchers published an article on the topic of perceived stigma in the public and personal domain.  The authors noted that to date, “no studies have examined perceptions or misperceptions of how the study participants themselves would be treated by the general public for seeking treatment for mental health concerns” and also analyzed specific factors (e.g., mental health symptoms, demographics) that might be connected to the perceptions.

A couple of terms must be defined before considering the findings, and extending a conversation started in my initial installment of this series. Public stigma is characterized as “the degree to which the general public holds negative views and discriminates against a specific group [in this case, those with mental health difficulties].” Personal stigma captures “how one actually would view and treat others themselves.”  That being said, research uncovered a number of interesting results.  Initially it was found that perceived public stigma was rated at a significantly higher level than personal stigma.  On the topic of personal stigma, 93% indicated “disagreement” that they themselves would view someone with mental health difficulties negatively while 0.8% “agreed” they would have a negative view of such individuals.  9 out of 10 raters indicated that those with mental health issues should not feel embarrassed, worry about their reputation, or see themselves as weak or think less of themselves in this situation.

Certain factors were significantly correlated with these findings. Individuals who reported higher levels of anxiety themselves were more likely to rate increased public stigma.  A more negative view of mental health treatment by the rater was also associated with heightened perceptions of public stigma.  In regards to personal stigma, men of Asian descent were more likely to acknowledge increased personal stigma (i.e., looking at the person in a negative way) while like with public stigma, an increased negative view of mental health treatment was associated with higher personal stigma levels.  Also, differences between a rater’s perception of public vs. personal stigma were associated with the following factors:  female gender and increased anxiety/depression scores of the raters.  In other words, females who were depressed/anxious tended to report a greater discrepancy between personal and public stigma than other raters, most likely with heightened public stigma reported (as noted prior).

Overall, the researchers found that raters endorsed much more elevated perceptions of public vs. personal stigma. In many ways, the raters seemed to say that while they felt the public often judged people with mental health problems differently, personally they would rarely or never do so.  The authors concluded, with much further discussion of mitigating factors, that the “general consensus towards mental health treatment may not be as negative as one believes.”

Before further discussion around these conclusions can ensue, it is critical that we look at all the factors that may have influenced or distorted the data in any manner, and which may have resulted in a perception of reality than may not be accurate. The first is the social desirability factor, means that people often act in ways that they think would reflect well on them.  In this case, it would potentially lead raters to answer in ways that preserve their own sense of integrity and positive image.  It is understandable that many might be leery about acknowledging their own negative attitudes towards others, even though the research was done confidentially.  Secondly, participants were college students.  Arguments can be made that 1) they are especially prone to the social desirability bias, and 2) do not represent a larger sample of individuals who have truly struggled with mental health issues, although certainly some in the sample did.  Third, the nature of the statements that were answered and how this influenced raters should also be considered.  For example, Pair 1 included the following statements regarding public vs. personal stigma, respectively:  “It would be too embarrassing” versus “They should feel embarrassed.”  Most of us reading this would likely feel uneasy ever asserting that someone should feel embarrassed (even if we felt this way), especially given circumstances with which they may not have been responsible (e.g., childhood abuse).  Fourth, there is a big difference between what we say we would do (or think) versus what actually occurs.  A huge body of research exists that indicates our unconscious behaviors may reveal stereotypes or discrimination that our conscious selves would deny.  Certainly, this is not an exhaustive list of possible influential or misleading agents, but it is a beginning.  I encourage others to provide comments about potential explanations that might alter findings that I have not included.

That being said, there is one final possibility even if the strength of the findings is compromised to a certain degree. It is the one with which researchers concluded, which indicates that public perception of mental health stigma does not entirely reflect a reality that exists.  Many of you reading this that have experienced truly negative reactions from others (due to mental health concerns and/or treatment) may be angered or offended by this proposition.  However, no one (especially myself) is saying that stigma is not a serious concern that doesn’t need to be addressed.  It is.  Although in some ways I do feel that people can seek out treatment with less apprehension today than decades ago, there is no doubt that many still experience negative reactions (intentionally or unintentionally) from what others perceive in them.

Still, I feel that this is an important discussion that has long since been neglected when the topic of stigma arises. As I said before, I do not believe (like almost anything else that exists in humanity) that stigma is entirely a one-way street.  In fact, when it is described this way, I feel that it does a disservice to both the person accused of stigmatizing and the person who feels stigmatized.  It has a way of widening a gap that needs to be shrunken and further fortifying an us vs. them mentality that needs to be bridged and destroyed.  Practically speaking, what often happens is that two groups of people who probably really need to talk and get to know, and respect, and maybe even love each other end up avoiding and despising each other instead.  I am not trying to be pollyannaish or unrealistic about this topic.  I am not suggesting that some people, no matter what the circumstances, may not hold to negative, discriminating beliefs.  But I do believe that division and unilateralism, in action, word, or belief, never leads to real progress.

Over the years, I have had many opportunities to confront my own explicit and implicit biases, and they almost always seem to happen when I finally get to know someone for who they are. As a young mental health technician working on an adolescent unit just out of undergrad, I remember so often hearing about the reports of individuals as they were coming onto the floor.  What happened over and over again was that when I would finally meet them, and get to know them, they would almost never live up to the reputation that preceded them; more importantly, I started to see them as the person they were and the struggles that had led them to me. I started to recognize the similarities we shared even if our stories sounded very different.  And I found that I could not help but empathize and care for them, and see the value that each person had to me, our society, and our Divine Creator.

But when a real, empathetic human experience does not occur in some manner, individuals in all positions feel disconnected. I think this happens often when the term “stigma” is thrown out as if the case is closed and no further discussion ensues.  Certainly many times the “offender” may have actually done something to discriminate or disrespect an individual with mental health difficulties; however, it is just as reasonable to assume that sometimes, a person’s perceptions of a stigmatizing act may not be what they seem, just like a bump in a hallway may either be accidental or malicious no matter what we think.  This idea coincides with the researchers’ findings that increased anxiety and depressive symptoms intensifies a perception of public stigma.  It is not surprising in that we all know when we are feeling down or anxious, we are often more likely to perceive a negative side in others than when we are feeling well.

As civil rights activists were planning the Montgomery Bus Boycott (as detailed in the Pulitzer Prize winning book Bearing the Cross), there was a clear sense that although activists were working against the injustices of bigotry and segregation, they also had to be particularly acute to the mistakes and misattributions of their own, as they knew that this might derail an otherwise noble undertaking.  Whether this was illegal or violent behavior, or misinformation or misperceptions put forth, leaders of the civil rights movement knew that they must acknowledge where they might have gone wrong (in deed or thought) so that right could be done.  So it seems, too, for the movement to provide the utmost care, respect, and love for anyone dealing with mental health challenges.  Everyone needs to go truth-seeking if “we shall overcome.”

Part III: The Critical Nature of Authenticity in Virtue in Combatting Stigma

So doctor, here is the question we are struggling with. We just want to know whether this behavior is part of his condition or just part of being a kid.  We don’t want to punish him for something that he can’t control. 

One of the most frequent questions that I get from parents sounds much like this. Spurn of good intent, they often want to know whether or not a specific action, usually a disruptive or harmful one, is something that they should just accept (or at least learn to manage) or a behavior that they should work and aspire to improve.

As a parent myself, I very much empathize with the question. I want to be a responsive, empathetic father to my kids. I also want to make sure that my expectations are appropriate based on a variety of factors, especially developmental ones. But as the years have progressed, I have found myself coming to a juncture where I feel that this time-honored question often ends up leading us in the wrong direction.  For starters, as I often say to parents, we are dealing with one mind and one body.  Although certainly situations may occur where both are not functioning in the way that we (or others desire), the idea of a division between the “condition” and “the person” is often artificial.  Certainly lesions on the brain can cause seizures.  A lack of activity and poor diet can increase the likelihood of anxiety.  But when we ask to define what is attributed to the “condition” or the “kid”, we can get into some muddy waters that go beyond how brain structures are operating, which never function in isolation.  Each of us is a dynamic composite of our imperfections as much as we are one of the qualities for which we excel.

But to understand how we as parents (or people) respond to differences we perceive, we must first ask what defines appropriate? Certainly this includes many things—developmental capacity, family expectations/values, societal norms, school/legal expectations, religious values, and the like.  Certain standards seem relatively easy to agree on.  Few people would argue that randomly stealing a car or destroying another’s possession is acceptable.  But other standards do not always evoke such a consensus, especially when we are talking about behaviors of youth and adults who have been identified with psychological or developmental concerns.

In fleshing out these areas, though, all of us must acknowledge that a few, critical determinations play a huge factor in deciding what is acceptable and what is not. One is simply whether or not we feel an individual is meeting the situational demands that are expected of them.  The other is the values of those who are around or responsible for them.  The third (and certainly connected to the other two) is how well (or not) a person’s actions preserve the integrity of other people who come in contact with them.  In response to the question posed at the beginning of the article, it seems the question should be reframed to say, “What do you feel like is important to teach them about how to act?” and/or “What behaviors do you feel should simply not be allowed no matter what condition they have?”  By no means am I saying that we should ignore what is reasonable to expect given what we know about them.  But in shifting to these areas of focus, what I am hoping to do is to both better understand the values and beliefs of the parents, and determining where energy is best allocated.  For example, it may be true that a 10-year-old child diagnosed with an autism spectrum disorder who is nonverbal and still can’t recognize letters has difficulty refraining from physical aggression.  But does that change the fact that this is simply an action that should not be accepted or allowed, but instead something we continue to work in changing?

A little ways back, a teenage girl came to me to talk about her brother, who is diagnosed with a genetic condition associated with various developmental/psychological challenges. One of her questions was, “How should I treat him?” Reflexively, I responded with “Like your brother.”  As I went on to explain, I encouraged her to love him unconditionally, but to not simply sidestep and allow behaviors that were not only detrimental to others, but also him and his development.  I encouraged her to tell him (in an honest, supportive way) when he did things that others clearly perceived as alienating or frustrating as well as encouraging and praising him when he acted positively.  Like any sibling, if your older sister isn’t going to tell you that you have corn in your teeth or you were acting goofy, no one will.

In regards to the issue of stigma, it seems that one of the mistakes made, often with good intention, is that we are often taught to give others allowances for behaviors if their circumstance or condition predisposes them to act in a certain way. For example, if a person is depressed, we are often taught to ignore them when they are rude.  Certainly I am not advocating that we walk down the sidewalk handing out free advice to everyone that we feel stands out for any reason.  But what I am saying is that we must start treating others like they are our brother—whose worth is equal to all even while uniquely their own—not someone who is different than I.  Stigma is at its worse when we separate “we” from “them” as if the diagnosis or label they have been given warrants a division that does not exist.  But when we see the fleshy, imperfect, human person for who we are, we are summoned to be authentic.  If we feel bothered or wronged by someone else, or feel that someone is harming themselves (with or without even being aware that it is occurring), then we must work through layers of fear and uncertainty and treat them how we desire to be treated.  Simply sidestepping the obvious, and then categorizing and dehumanizing them (now or later) only intensifies the separation that both people will feel.

As I speak of this, I am sure that flashes of all kind are arriving at your cortex. Beyond the obvious obstacles that may rise to the surface, one of the challenges to this mode of thought might start with two simple thoughts:  “Who are we to judge others?” and “Why should I impose my values on others?”  In response to this, I begin with a simple premise:  “If I do not give of myself authentically to others, through whatever means this may occur, then what do I have to give?”  Certainly, many of us may think differently about circumstances as they appear.  But in our daily life, we are not first asked to render legislative or medical decisions; we are asked to deliver honest, compassionate ones.  If my response begins with anything less than this, it is a contrived one—not an authentic one derived from millennia of living and loving and dying together.  Whether a person is depressed or autistic or has an IQ of 40, it does not change this.  You are one of me, and I am one of you.  So, if I let you know that I wished you wouldn’t scream in public or act rudely to one of my friends, I want you to know that it is not because I am judging you.  It is because I am attempting to love you, like I would my brother.

What emerges from authenticity is something even better, and sets the stage for the gift of courage. While we all may seem to be very different in mind and body, there is a force that has remained remarkably consistent throughout the ages even as much has changed.  As I noted in my newest book, it is the value of virtue. Regardless of race, creed, practice, or experience, people consistently report that virtue remains virtue.  Six universal virtues exist.  They are wisdom and knowledge, courage, humanity, justice, temperance, and transcendence. Within these six virtues are 24 character strengths, also endorsed across the world.  For example, courage is composed of authenticity, bravery, persistence, and zest while temperance is composed of forgiveness, modesty, and prudence.  Available to all, exclusive to none, these virtues and strengths run like an undercurrent through our world, and into another.

Still, people will argue that although all (most) believe in virtues such as justice and humanity, “the devil is in the details.” Similar virtues may look different in practice. To some extent, I acknowledge this assertion.  But I also believe that in our politically, dramatically inclined landscape, so much time is spent demonstrating how we are different that it underscores just how much we are not.  I put forth a contention that most people agree on whether most actions are virtuous or not, regardless of circumstances or condition.  Instead of being so worried about the outcomes (and reported conflicts of our beliefs and behaviors), we would be better spent focusing on our process and intent.  While we can never fully control what will happen when we act, we can always control why we act.  If we started focusing much more on the latter than the former, I believe that what we will find is a society built on compassion and honesty instead of one marred by division and distrust.

Like most issues, the struggle of stigma stems from a much deeper place than the labels and the alienation might suggest. It stems from a notion that somewhere along the line, we began to diverge from each other as authenticity moved away from our responding.  We began to compile reasons why value was equated with status, and brotherhood with membership.  We began to lose sight of each other and started to see descriptors that clouded where we began.  In some ways, it is not a new problem.  Two thousand years ago, the lepers were left to die because of fear and derision.  I understand.  I don’t want to get sick, or hurt, or even be uncomfortable simply because of another person.  Of course, that person could be me.  If we are going to really make a difference in the world of mental health stigma, we must get to the heart of the matter.  All people deserve compassionate, honest care.  All people, stigmatized and stigmatizers, deserve to be heard, understood, and valued, no matter what worth society may place on them.  I am my brother’s keeper.  You are mine.

A few months ago, I attended a silent retreat on the banks of the Mississippi River south of St. Louis.  Lead by a remarkable Jesuit priest who had lost his father to suicide at a young age, it was a much needed few days spent largely in the silence of my own mind.  As I sit here reflecting on one particular talk he gave, emotion wells up in me.  Father recalled his days in hospice care, and how one morning he entered into a somber place that had long dealt with the saddest circumstances people could bring.  The nurses informed him that they had received an infant the night before.  Disfigured worse than they had ever seen, the baby boy had one eye, barely a nose, and a face that looked inhuman.  Everyone seemed uncomfortable.  But as Father spoke, he recalled this sudden, deep desire to go to this child’s room to hold him, and rock him like his own.  When he did, he was astounded at the beauty and majesty that he saw in this little boy.  Others came to see the same thing; they repeatedly sought to hold him throughout the days.  He died a few weeks later.  When he did, all mourned.  It was clear that this beautiful child had evangelized love.  Those that knew him would not be the same.  Neither would I.

Leave a Reply

Your email address will not be published. Required fields are marked *