Carol Yorkievitz Carol Yorkievitz

Loneliness and Social Isolation

I attended a workshop on loneliness put on at a yearly NAMI (National Alliance on Mental Illness) state conference. My interest in the topic stems from my own experience of terrible, debilitating isolation with my schizophrenia and the recognition that many with mental illnesses are also extremely isolated. That is not to say, that others are not similarly affected, but that the isolation of the mentally ill is often extreme. I believe we can all be involved in the project of making our world more connected, kind and responsive to our oh-so-human needs.

My hope in summarizing this presentation is that it will validate the feeling of many of us that we are lonely or disconnected and will offer some insight into the causes and cures of this social malady

The presenter was Valerie McNicholl of Move Forward Counseling. Ms. McNicholl, LCSW, based her talk on the Surgeon General’s 2023 report: Our Epidemic of Loneliness and Isolation. She characterized loneliness as a subjective feeling and isolation as an objective fact, meaning not being connected to networks, etc. The bottom line is that human beings are wired for connection, which is necessary for survival. Isolation means having to manage all life tasks on one’s own, a heavy burden, if not an impossible one.

The experience of loneliness triggers a pain response in the brain, just as does a broken arm. Our brains light up differently when we see people or animals, but not things. We have social capital, just like financial capital, which consists of social support (i.e., the number of networks we belong to) and social cohesion (i.e., a feeling of connection). Ms. McNicholl pointed out that there is no one word for “not lonely.” I suggested “connected,” but this did not seem to fill the bill.

Three ways to think about social connection are its structure, function and quality. (Sorry to get academic here.) Structure might be characterized as the type of relationship and the frequency of interaction, while its function might be the degree to which the relationship serves various needs. Its quality can be conceptualized as the positive and negative aspects of the relationships and interactions. Concrete examples would be household size, size of friendship network and partnership status. These relate to such things as the availability of emotional support, mentorship, and support in a crisis. The quality of the relationships can be understood in terms of relationship satisfaction, relationship strain, and social inclusion and exclusion. (I would add here in speaking of negative quality, that all relationships are not equal. Some are dysfunctional. An example might be an abusive relationship or one that isolates one of its members.)

The benefits of connectiveness are many: economic, educational, the health of the population, preparedness for natural disasters and resilience to them, community safety and civic engagement.

Chronic loneliness and isolation impact health. Where social isolation is high, there is an increased risk of early death; social connectiveness reportedly increases odds of survival by 50%.

Ms. McNicholl reported that the lack of social connection has a greater effect on mortality than smoking 15 cigarettes a day or drinking 6 alcoholic drinks (I’m not sure of the time frame here), lack of physical activity, obesity or air pollution.

It was estimated that the cost of social isolation and loneliness exceeds $406 billion for the whole economy and reaches $6.7 billion for Medicare. (This is no small potatoes!)

Some risk factors for isolation are low income, age, living alone, chronic disease and disability, marginalization or discrimination (against such things as mental illness, race, and LGBTQ status) and life transitions (such things as becoming a parent, leaving home, becoming homeless, and suffering a divorce).

Those most lonely in general are 15-25-year-olds and older people. In 2022, 50% of adults reported experiencing loneliness, which is manifested in relatively large declines spent in engagement with household and family, with companions, in numbers of social engagements with friends, etc. Changes in the organization of work contribute to this syndrome as do declines in marriage rates, in family size, in faith-involved groups, changes in parenting strategies, in the ascendency of technology over play, decreased involvement in community organizations, and perceived safety. I would add the disruption caused by the pandemic to this list.

So, what possible strategies for combatting this epidemic were presented by Ms. McNicholl?

Macro Solutions: 1) strengthening social infrastructure in local communities (safe parks, pools); 2) enacting pro-community public policies; 3) mobilizing the health sector); 4) reforming digital environments; 5) deepening our awareness and knowledge; and 6) cultivating a culture of connection.

Micro Solutions (things we personally can do): 1) participating in community events and groups; 2) using community gathering spaces; 3) checking on others; 4) prioritizing social interaction over use of technology; and 5) modeling social engagement.

I hope my project can contribute to the breaking of the silence around. and hence, the isolation of, mental illness and contribute to opening up society to more authentic and engaged communication and connection for all its members.

 

The Surgeon General’s full report is available from the U.S. Department of Health and Human Services. It is Googleable!

 

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Self-Stigmatization in Persons with Serious Mental Illnesses

Many people are at least somewhat aware of the seemingly intractable problem of the stigmatization of those with mental illnesses. According to the World Health Organization, stigma is the primary reason for discrimination aand rejection of people with mental illness. It hinders the prevention of mental illness and the treatment and care of those who suffer from these disorders. Stigma violates human rights.

However, there is yet another layer of stigma that we need to be aware of, whether one is someone suffering from a mental illnesss or someone concerned with the well-being of the mentally ill. This is self-stigmatization. In other words, it is the internalization by a person with mental illness of the prevailing cultural view of mental illness as deviant, a socially-devalued status. A thing of shame and unworthiness.

When one is diagnosed with a major mental illness, one often takes that as THE defining characteristic of the self, the main identity that supersedes all others. The consequences of assuming that identity or having it foisted on one can be profound. Self-stigmatization may have many negative consequences:

  • lowered self-esteem, self-worth, and self-efficacy;

  • lessened ability to recover;

  • failure to seek help;

  • feelings of shame;

  • emotional distress;

  • isolation and loneliness;

  • difficulty in finding meaning in life;

  • unemployment and financial precarity;

  • increased risk of suicide;

  • and lack of hope.

    The presence of any or all of these factors results in a poorer quality of life for the mentally ill individual and diminish society as well.

Mental Health Statistics

Profiles in Mental Health Courage is a new book by Patrick J. Kennedy and Stephen Fried. I recently had the opportunity to hear Mr. Fried discuss the book. The authors follow folks with mental illnesses as well as people in their respective orbits. Early on, it cites statistics from the Mental Health and Substance Use Disorders Prevalence Study (2022) conducted by the U.S. Dept. of Health and Human Services. I will excerpt some of those numbers here with a view to showing just how many folks are impacted by mental illness. What these statistics don’t show is the social and economic cost of these disorders, nor the ripples that affect millions of family members of those with mental illnesses. While I haven’t been able to find out exactly how HHS arrived at these numbers, they are staggering on their face. The effects of mental illness reverberate throughout our society.

·        One in four Americans (84 million) had one or more mental disorders.

·        One in twelve (6 million) had two or more mental disorders.

·        One in ten (34 million) had one or more substance use disorders.

·        11 million at least one mental health disorder and at least one co-occurring substance use disorder.

·        31.4 million had major depressive disorder

·        3.7 million had a lifetime history of schizophrenia spectrum disorders.

·        2.5 million met diagnostic criteria for schizophrenia spectrum disorders in the past year.

·        13.4 million met criteria for alcohol use disorder in the past year.

·        1 million had an opioid use disorder

Only 60.8 percent of those with any mental disorder received treatment in the past year.

 

       So, What Is Schizophrenia?

 

I’ve been using the word schizophrenia without ever defining it. As a starting point, nowadays, schizophrenia is seen as existing on a spectrum, rather than being a matter of simple presence or absence. Note there are no biomarkers for schizophrenia, so there is a certain subjectivity built in to attempts to corral this disorder.  I will not go into the clinical definitions in the Diagnostic and Statistical Manual, the go-to source for psychiatrists and other professionals. Rather, I will reference some content from Onemind, a leading brain health nonprofit.  It provides a useful tripartite look at symptoms.

Psychotic Symptoms—those that make it difficult to determine what is real and what is not. They include:

          Hallucinations, such as hearing voices or seeing things that are not there

          Delusions, which are firmly held beliefs not supported by facts

          Thought Disorders, which include unusual thinking or disorganized speech

Negative Symptoms

          Reduced motivation and difficulty planning and carrying out activities

          Diminished feelings of pleasure in everyday life

          “Flat affect:” reduced expression of emotions in face or voice

Cognitive Symptoms:

          Difficulty in processing information to make decisions

          Problems using information immediately after hearing it

          Trouble focusing or paying attention.

Onemind reports some 20 million people worldwide suffer from this disorder and that 69% of people with schizophrenia do not receive adequate care. Further, some 90% of those with schizophrenia in low- and middle-income countries are untreated. A sobering statistic:  20% of people with schizophrenia attempt suicide at least once.

 

MENTAL ILLNESS AND VIOLENCE

 

It seems to me to be the case that the public and the media often assume mental health issues on the part of those committing violent acts, including those of mass violence or community violence, often without any evidence.  These stereotypes strengthen the stigma attached to mental illness. Thus, the effort put forth by the researchers in this area are important both for the possibility of predicting violent behavior and for quashing or modifying social myths about mental illness as a cause of violent behavior. An American Psychological Society article discusses research on this topic. It is subtitled: Debunking Myths, Addressing Realities. It reports that a growing body of research in helping to tease apart why some people with serious mental illness are prone to violence while others are not. 

In this article Dr. Eric Elbogen of Duke University School of Medicine is quoted as saying that perpetrating violence is relatively uncommon among those with serious mental illnesses, usually considered only to include people with schizophrenia, bipolar disorder, and schizoaffective disorder. However, when violence does occur “it is usually intertwined with other issues such as co-occurring substance use, adverse childhood experiences, and environmental factors.” Other risk factors for violent behavior may be such things as having been abused as a child, being unemployed or living in a high-crime area.

One study found that in a nationally representative sample, 2.9% of people with serious mental illnesses committed violent acts within 2 to 4 years following the study’s baseline, compared with .8% of those with no serious mental illness or substance use disorder. The co-existence of mental illness and substance use disorder raised the level to 10%.  This may suggest a link between mental illness and violence, but from what I have read, people with mental illness are more often victims of violence than perpetrators.

So how do we explore the relationship between violence and mental illness?  The MacArthur Violence Risk Assessment Study found that two clinical symptoms were associated with violent acts: command hallucinations (psychotic voices telling a person to harm others) and psychopathy, which is not considered a serious mental illness, but is characterized by a lack of empathy, poor impulse control, and antisocial deviance. Interestingly, a further finding was that where neighborhoods are unsafe, poor and high in crime, violence is an equally likely outcome whether a person has mental illness or not.

When three major areas that heighten the probability of violent acts are controlled for, participants in the study with mental illnesses are less likely than those without mental illness to commit violent acts. These are: [1] internal factors such as anger and perceived threats; [2] situational factors such as divorce, financial problems or victimization, or [3] external factors such as drug or alcohol use.

In general, the research into the relationship between serious mental illness and violence is still underdeveloped and characterized by the use of different population samples, and different definitions for violence and mental illness. This lack of uniformity leads to a bit of murkiness; some studies find relationships, other do not.

                   The Rise in Mental Health Care Use

The Kaiser Family Foundation has complied statistics exploring the rise in mental health care use between 2019 and 2022.  In 2019, the percent of adults who reported receiving mental health care was 19%.  In 2022, the percent was 23%. When we break it down into those taking prescription medication and those receiving counseling, we see a change from 16% to 19% and 10% to 13%, respectively, over those years.

They report that, compared to older adults, young adults (18-26 years old) were more likely to receive mental health treatment and show an increase in use of mental health services of 45% over this period!

Women are nearly twice as likely to report receiving mental health treatment compared with men:  29% compared to 17%.

Receipt of mental health treatment was highest among White adults and lowest among Asian adults. In 2022, 28% of White adults reported receiving counseling and/or prescription medication for mental health conditions in the past year, compared to 16% of Hispanic and Black adults and 9% of Asian adults. The Hispanic, Black and Asian adults report disproportionately more challenges with: 1) finding a provider who is culturally competent; 2) having necessary information; and 3) stigma and embarrassment. A significant factor is the lack of a diverse mental health care workforce.

For all adults, a final factor in the rates of receipt of mental health care is insurance. Some 25% of insured adults report receiving care compared with 11% of uninsured people. Even among insured adults, 43% said there was a time in the past year when they did not get the mental health treatment they needed, and 45% gave their insurance a negative rating for the availability of mental health providers.

All of which is to say that we have a long way to go in getting people the help they need and deserve. Parity between medical and mental health care is still a long way off.

 

Disability, Equity and Mental Health Research

 

The National Institute of Mental Health is presenting a series on this topic. The August 8, 2024 speaker was Professor Nev Jones, PhD, of the University of Pittsburgh. Dr. Jones presented a rather academically-oriented discussion which stressed the need to include persons with “lived experience,” the term in this case for those with mental illness, in all aspects of research on mental health. The goal of doing that is to be able to explore disparities in mental health outcomes for people with disabilities.

She stated that among those underrepresented in research are people with long-term psychotic disabilities, those with highly stigmatized diagnoses such as schizophrenia, those in the intersections of disability, poverty and structural racism, those who experience a loss of rights in prisons, and those with a long use of antipsychotic medicines.

Dr. Jones advocates for a social change orientation to this research and points out that knowledge itself is socially situated, affected by power relations among other things. Marginalized groups are socially situated in such a way as to make them more aware of what impacts them and more able to ask relevant questions than those in the dominant group(s). Further she says that research focusing primarily on power relations should begin with the lived experience of the marginalized.

As examples of things to be researched are: what it is to experience intense psychosis—often dismissed as “symptoms” and not meriting attention; what it is to be labeled as paranoid and threatening—which often happens with Black people; what it is to be handcuffed, restrained or secluded in prisons or mental hospitals.

Now, I’ll throw a big phrase at you: Epistemic Oppression. This is what hinders a group’s contribution to the production of knowledge. Knowledge is produced, not just out there in the atmosphere. As an example of this, the idea of marital rape didn’t exist as a thing for years because of gender hierarchies and oppression. Now, we can find it in the law.  Jones argues that the experiences of psychosis are similarly repressed or dismissed, made invisible or oversimplified. In part this is because it is easier to measure and agree on what is visible. Experience of psychosis represent changes that are so ineffable, so profound, so complex that they affect perception, thought, ideas of the self and consciousness and the labels of hallucinations and delusion obscure and erase what language doesn’t capture. They are oversimplifications which lose sight of the actual experiences of those affected.

Dr. Jones presented much more information, but I will perhaps save that for another time.

                             Therapy-Speak

 

In the Monitor on Psychology an article relates the rise in therapy-speak—the increasing use of psychological concepts in viral TikTok videos, among friends conversing in public and in popular songs. One psychiatrist says mental health language has always sort of seeped into colloquial speak, but it’s been amplified among a more emotionally aware generation. 

There are pros and cons to this trend, psychologists say. One the one hand, the public’s embrace of therapeutic concepts shows an increased awareness around mental health issues and helps people find identity and community, and can make psychology more accessible in general. On the other hand, the terms are often misused and interpreted, keeping people stuck in self-diagnoses instead of seeking evidence-based solutions. They may also minimize the pain of people with serious psychiatric illnesses.

One point they are making is that the increased availability of psychological language gives people a way to describe what may be happening to them. For example, a lot of people who were in abusive situations didn’t have the word ‘abuse’ and that made them more likely to blame themselves, to be confused by what’s happening, and to overly internalize the situation as opposed to seeing it as a situation that they did not cause and need help escaping from.

Further, the power of language may help someone find a name for a way of thinking or behaving that they once thought was uniquely, and negatively, them. There has been explosion of social media content around neurodivergent conditions like autism spectrum disorder and ADHD. ADHD has been hash-tagged in more than 3.2 million videos on TikTok. It has helped some of those who are formally diagnosed find online communities with which to connect with others like them, swap coping skills, and learn vocabulary for the things that they experienced but did not realize were related to ADHD.

On the flip side, identifying with a particular diagnosis that someone has found online or in pop culture can keep them stuck if they don’t seek more evidence-based information and support. Pathologizing ourselves or others may result in forgetting that we all constantly evolve. Further, one psychologist says, “When you give yourself a label... maybe you use it as an excuse for non-pro-health behaviors or non-pro-happiness behaviors. But at worst, you put yourself in a box that you feel you can never get out of.” 

The advances in technology mean anybody can share information about anything and everything. One report that evaluated 500 TikTok videos with the hashtags #mental health or #mental health tips found that 83.7 % were misleading (e.g., delivered by non-health care professionals without that disclosure) and that 14.2% included messages that could be damaging (like encouraging people to take a medication without consulting a doctor). There is no direct relationship between the accuracy of what’s being shared and how rapidly it spreads.

On a broader scale, mental health misinformation may color people’s views of what’s mental illness—and what’s a normal part of the human experience. The article goes on to list words that are often misused:  Triggering, Trauma, OCD, Self-Care, Imposter Syndrome, Bipolar, Gaslighting. Rather than go into all the misuses that the article identifies, I will report on just two.

Instead of lightly throwing around the phrase, “She’s so bipolar,” when referring to a friends’ moodiness, one should say exactly what one means: “she’s unpredictable.” Using the term loosely may not only belittle the experiences of those living with mental disorders, but also perpetuate stigma against them.

Obsessive-Compulsive Disorder (OCD) is used among the general public to suggest diligence and care, that supposedly reflect chosen behavior. But in actuality, OCD refers to a clinical condition that is characterized by repetitive intrusive thoughts, doubting one’s one experiences, and compulsive behaviors that people do not choose but feel compelled to do. The condition causes quite a lot of suffering.

In sum, the spread of therapy-speak is a two-edged sword, giving language needed to describe one’s experiences, but potentially misused.