The silent shame of medical stigma

It is an old problem in medical care — and human life. The stigma of some human conditions — weight gain, mental health, substance abuse, and now monkey pox, to name a few — brings shame.  And shame brings silence. And silence makes it hard for those who need help to get it. 

As modern societies and health care workers struggle to eliminate unacceptable inequities of many different kinds, stigmatization is gaining increased attention.

So let’s spend a little quiet time with stigma: why it hurts, how to make it better. In this newsletter, five things we all need to know — for ourselves, our loved ones, and our society.

Photo credit: detail from Auguste Rodin, The Burghers of Calais, Rodin Museum, Philadelphia.

In ancient Greece, people who were regarded as shameful, disgraceful, or requiring punishment — including slaves, prisoners, and traitors — were tattooed or marked, so they would be avoided. Their body signs were called stigma, or stigmata in the plural.

The religious recognize these terms, too, because they also have been associated (quoting an encyclopedia definition) with “bodily marks, scars, or pains corresponding to those of the crucified Jesus Christ — that is, on the hands, on the feet, near the heart, and sometimes on the head (from the crown of thorns) or shoulders and back (from carrying the cross and scourging).”

In health terms, stigmatization refers to sharply negative attitudes toward or beliefs about those with illness, injury, or marked physical or mental differences. This wrongful thinking, experts say, manifests itself in ugly behaviors — discrimination by race, gender, and sexual orientation, as well as other ways of abusing others in speech and action. As the federal Centers for Disease Control and Prevention explains on its website:

“Stigma is discrimination against an identifiable group of people, a place, or a nation. Stigma is associated with a lack of knowledge about how [for example, disease] spreads, a need to blame someone, fears about disease and death, and gossip that spreads rumors and myths.”

This isn’t abstract or esoteric stuff. During the pandemic, for example, hate crimes against Americans of Asian descent spiked as the ignorant and outspoken associated the coronavirus’s lethal effects with the mere happenstance of where the disease was first identified (in Asia). This prompted the unbalanced to physically attack and make derogatory remarks against Asian Americans in record numbers. When doctors first began to diagnose HIV-AIDS cases, some medical professionals and health care facilities declined to treat infected patients, and many of the sick, particularly those with the related, visible Kaposi’s sarcoma,  were forced out of housing and out of public sight. Now, public health officials have walked a tightrope in battling the Western outbreak of monkeypox, seeking to avoid negative views about a disease that has been more prevalent in Africa and its current, most common means of transmission — chiefly among men who have sex with other men and with multiple partners.

Photo credit: Edvard Munch, Melancholy, Børre Høstland/Lathion, Jacques, Nasjonalmuseet (National Museum of Norway)

Human beliefs and behaviors aren’t always easy to explain, deal with or alter. When people stigmatize others due to disease or injury, however, mental health experts have research-based theories about why those with certain conditions suffer opprobrium while others do not.

In more backward times, people stigmatized the sick or injured — both inside and outside their tribal societies — not only because they were afraid and ignorant but also as a crude self-protection against outsiders’ contagions and the harms that uninformed individuals believed were associated with others’ injuries.

Stigmatization also provides insights into baser parts of ourselves and our character: We reject in others what we fear or dislike in ourselves, experts say. This can be oversimplified, and it is hard to shorthand the complexities of people’s thinking.

But experts say that we worry, for example, that others think us lazy, undisciplined, and fat, so we point at others carrying excess weight and deride their problem as a major deficiency. We “fat shame” them.

We do not want to be thought of as weak, so we abhor weakness in others, shunning those we think are “feeble” because they have mental illnesses or chronic conditions like cancer. We put such a high value on skin-deep beauty that we recoil at those disfigured by injury or those with scarring diseases like leprosy or illnesses like monkeypox that can cause pustules to erupt all over the face, hands, and body.

We hold our own character at such heights that we hold in contempt those we blame for having personal failings that result in substance abuse, not accounting for the debilitating and addictive qualities of drugs and alcohol.

Stigmatization may seem like a big word, but as experts study it, the term only begins to describe significant harms to those who suffer it, particularly when it comes to treating their medical and mental health needs.

As one medical journal article described the problem:

“[S]tigma [when it occurs] in health facilities is particularly egregious, negatively affecting people seeking health services at a time when they are at their most vulnerable. In health facilities, the manifestations of stigma are widely documented, ranging from outright denial of care, provision of sub-standard care, physical and verbal abuse, to more subtle forms, such as making certain people wait longer or passing their care off to junior colleagues. As a result, stigma is a barrier to care for people seeking services for disease prevention, treatment of acute or chronic conditions, or support to maintain a healthy quality of life. Within the health system, stigma towards a person living with a specific disease undermines access to diagnosis, treatment, and successful health outcomes.”

The American Psychiatric Association reported this:

“Stigma and discrimination can contribute to worsening symptoms and reduced likelihood of getting treatment. A recent extensive review of research found that self-stigma leads to negative effects on recovery among people diagnosed with severe mental illnesses. Effects can include: reduced hope, lower self-esteem, increased psychiatric symptoms, difficulties with social relationships, reduced likelihood of staying with treatment, [and] more difficulties at work. A 2017 study involving more than 200 individuals with mental illness over a period of two years found that greater self-stigma was associated with poorer recovery from mental illness after one and two years … Some of the other harmful effects of stigma can include: Reluctance to seek help or treatment and less likely to stay with treatment; social isolation; lack of understanding by family, friends, coworkers, or others; fewer opportunities for work, school or social activities or trouble finding housing; bullying, physical violence, or harassment; health insurance that doesn’t adequately cover your … treatment; [and] the belief that you’ll never succeed at certain challenges or that you can’t improve your situation.”

History shows that public attitudes about diseases and injuries can change significantly — mostly for the better. Consider:

§ How backward the ancient animus towards leprosy now seems;  by the late 1950s, it became a plot point in the award-winning religious-themed movie “Ben Hur.”

§ How odd it would be if someone fell asleep during Ronald Reagan’s presidency and remembered only the cruel, isolating, and widely held negative views about HIV-AIDS so prevalent then. The person now would be startled to see the array of Big Pharma ads splashed on broadcast TV now for prescription pre-exposure prophylaxis or PrEP drugs.

§ Travelers to other countries — including China, Japan, Singapore, Spain, Greece, and Italy — are finding that, slowly, longstanding practices are giving way, so that doctors inform patients with stigmatized chronic diseases like cancer that, yes, they have a serious illness. Sharing such information is not as common as it is in the United States. In this country, patients have the fundamental right to informed consent. This means they must be told clearly and fully all the important facts they need to make an intelligent decision about what treatments to have, where to get them, and from whom. In this country, the disapproving views of cancer have changed so much that important courts have held that in libel cases it no longer is a “loathsome disease” that damages reputations when reported. Still, doctors and patients must work harder to ensure that communication about the severity of the disease is clear to individuals and their loved ones.

§ Remarkably, some fundamental scientific advances — like antibiotics, germ theory, and vaccinations — have changed perceptions about contagions that once caused people to recoil. When would regular folks last recall a public speaker railing about the repugnance of someone with cholera, yellow fever, typhus, bubonic plague, or tuberculosis?  

Photo credit: National Library of Medicine, ‘Surviving & Thriving’ digital exhibition, HIV-AIDS protest at National Institutes of Health.

If you’re human, you’re imperfect. We all have blind spots in our thinking and behavior towards those with health and mental health conditions, experts say. But informing ourselves and talking through what we do and don’t know about illness, injury, and disability can be crucial in reducing stigma’s harms.

The psychiatrists’ association, which campaigns against inequitable treatment of those with mental illness, shares these suggestions that also can be generalized as to how to deal with stigmatization:

“Talk openly about mental health, such as sharing on social media. Educate yourself and others — respond to misperceptions or negative comments by sharing facts and experiences. Be conscious of language — remind people that words matter. Encourage equality between physical and mental illness — draw comparisons to how they would treat someone with cancer or diabetes. Show compassion for those with mental illness. Be honest about treatment — normalize mental health treatment, just like other health care treatment. Let the media know when they are using stigmatizing language presenting stories of mental illness in a stigmatizing way. Choose empowerment over shame.”

Read the published research on stigmatization of many different patients — those who have challenges with weight, skin disorders, substance abuse, chronic illness, disfigurement, infectious diseases — and humanistic insights emerge.

The way we use words really matters. Take suicide, for instance. We used to casually say that someone “committed suicide.” Then we recognized that most of those who die by their own volition aren’t really in control of their deadly impulses. So now the more accurate way to say it is that someone “died by suicide.”

These are not cliches, and not just a roster of what is “politically correct.” Once people understand what causes health conditions and realize that sufferers cannot fully control circumstances that lead to them, why blame and shame them? Will stigma ease for the overweight when researchers establish that obesity is a complex disease,? Or for substance abuse, that some drugs have walloping addictive powers and that these can underlie substance abuse?  Regular folks typically don’t ostracize those with strokes, pneumonia, or limb loss due to car wrecks. They see that bad things happen. They offer empathy, compassion, and kindness to those who suffer catastrophic illness or injury. Those are qualities that “better angels” surely can spread around, especially with an estimated 6 in 10 Americans living with chronic illness of some kind.

Photo credit: a medical exam as part of treatment involving staff of the federal Centers for Disease Control and Prevention. CDC.