The Power of Stigma: Say It Ain’t So

Some things we don’t talk about. Some issues are too fraught to put into words; others are simply too shameful. When disease veers from the disconcerting to the disgusting, it ventures into the realm of the taboo and intersects with the powerful influence of stigma.

Stigma is the result of social disgust. If a person or group differs from the perceived norm in a way deemed unacceptable or socially deviant, that behavior can elicit disgust in others and shame in themselves3. Stigma is insidious; it impacts the stigmatized through a variety of means, including discrimination, and threats to their personal and social identity. In our daily lives, we are constantly trying to evaluate the responses of people around us, picking up social cues about our social position. When we feel stigmatized, we can feel like our social identity (how others see us) is in jeopardy, which can trigger involuntary stress responses, affecting our physical and mental health7. Although on some level stigma affects everyone, it is at it’s most dangerous when social, economic or political power is leveraged against a stigmatized group2,3,4.

What’s in a name?

Not only does stigma directly affect our health by causing stress, it can also indirectly impact our well-being by deterring us from seeking help. The heavy stigma around mental health issues have had a huge impact: in the US and Europe, 52-74% of people with a mental health condition are not treated, and the number is even higher in low and middle-income groups. A massive review of 144 quantitative and qualitative studies found that stigma has a small to medium-sized negative effect on help-seeking. Men, ethnic minorities, and people in the military and health professions are disproportionately dissuaded by stigma. Of the various forms of stigma, internalized stigma (disgust that the stigmatized feel toward themselves) and treatment stigma (stigma about the treatment of a condition) are the most likely to impede help-seeking. While stigma itself is only the fourth greatest barrier to help-seeking, the issues that trump it, like fear of disclosure (ranked first), are likely influenced by it4.

stigma
You can’t get there from here.

A way with words

Combatting stigma is complex, and can sometimes backfire. Biogenetic explanations for mental disorders, meaning an understanding that mental disorders are biological, and not a sign of a weak or deviant character, have been promoted as a way of addressing stigma against the mentally ill. Unfortunately, while people who believe biogenetic explanations for mental disorders tend to blame the affected people less for their condition, they also perceive them as more dangerous and want to have greater distance between themselves and the ill. And although belief in biogenetic explanations reduced blame, it only weakly reduced stigma5. But it’s not all bad news! There are other promising interventions for reducing stigma at all levels, including therapy, sharing positive stories about the stigmatized, and contact-based training and education programs for professionals who interact with the stigmatized, such as medical students6.

Stigma’s relationship with public health is also complicated. Public health interventions, such as quarantine, can reinforce or even create stigma. The AIDS crisis is a perfect example of the devastating power stigma can have on the ill; it layered the isolation and indignity of an unknown and terrifying disease on top of the social backlash against the gay community, further marginalizing an already vulnerable group and contributing to the spread of the virus. But while stigma can certainly threaten public health, it may not always. After the negative health effects of smoking became widely known in the 1960s and 70s, there has been a series of campaigns against it. Many of these efforts depend on making smoking socially unacceptable for non-smokers and inspiring guilt in smokers: all the makings of stigma1.

Wielding the shame of stigma is a dangerous game, even when done for the best reasons. Stigma threatens what matters most: our place in the community around us, our relationships with those we love and admire. It is a brutal force. Is it any wonder it hurts so much?

References

  1. Bayer, R. 2008a. Stigma and the ethics of public health: not can we but should we. Social Science & Medicine, 67:463-472.
  1. Bayer, R. 2008b. What means this thing called stigma? A response to Burris. Social Science & Medicine, 67:476-477.
  1. Burris, S. 2008. Stigma, ethics and policy: a commentary on Bayer’s “Stigma and the ethics of public health: not can we but should we. Social Science & Medicine, 67:473-475.
  1. Clement, S., O. Schauman, T. Graham, F. Maggioni, S. Evans-Lacko, N. Bezborodovs, C. Morgan, N. Rüsch, J.S.L. Brown, & G. Thornicroft. 2015. What is the impact of mental health-related stigma on help-seeking? A systematic review of quantitative and qualitative studies. Psychological Medicine, 45:11-27.
  1. Kvaale, E.P., W.H. Gottdiener, & N. Haslam. 2013. Biogenetic explanations and stigma: a meta-analytic review of associations among laypeople. Social Science & Medicine, 96:95-103.
  1. Livingston, J.D., T. Milne, M.L. Fang, & E. Amari. 2011. The effectiveness of interventions for reducing stigma related to substance abuse disorders: a systematic review. Addiction, 107:39-50.
  1. Major, B., & L.T. O’Brien. 2005. The social psychology of stigma. Annual Review of Psychology, 56:393-421.

Image source: http://starrfmonline.com/1.1966021

The Good Samaritan: Religion and Epidemics

The parable of the Good Samaritan, the story of a man coming to the aid of a beaten and bleeding traveller ignored by other passersby, is a mainstay in the teachings of Christianity. The Good Samaritan embodies a common theme in the world’s faith traditions, the idea that we should look beyond social distinctions and self-interest to help those in need. It is a plea to lead by example, to live by the Golden Rule. At its best, organized religion achieves this kind of grace, and sets an inspirational example.

Do unto others

The relationship between religion and epidemic disease is, to put it mildly, complicated, and at times even contradictory. In the name of religion, some have denounced the sick, arguing that the spreading illness (i.e. HIV/AIDS) is a curse from God, and have impeded public health efforts. Religious cultural practices, particularly funerary rites involving contact with the remains, have inadvertently helped spread disease, such as Ebola4. But on the other hand, religious groups have also done exactly the opposite: tirelessly work to dispel the belief that epidemics are divine plagues, promote preventative practices like condom use, and tackle the challenges of illness on the ground. The work of faith-based organizations (FBOs) has been essential for the care and support of people living with some of the most intractable and frightening epidemics of the modern era, including HIV and Ebola1.

Throughout the current Ebola epidemic in West Africa, FBOs have played an important role in stemming the tide of the outbreak. Many have established medical missions, clinics staffed by foreign medical professionals, usually on a short-term basis2, in the affected region. This work demands compassion and courage, because the risks are high. The first two American cases, Dr. Kent Brantly and Nancy Writebol, contracted the disease while treating patients in Liberia at a mission run by the FBO, Samaritan’s Purse. Both survived and Brantly has publicly pointed to his faith as his inspiration, professionally and personally. After recovering, he has continued to selflessly combat the disease, setting a startling example of individual belief and bravery. Brantly had donated his plasma (infusion with the plasma of an Ebola survivor is a potential treatment for Ebola) to three patients, another medical missionary, Rick Sacra, and two infected Texan nurses, Nina Pham and Amber Vinson5.

good samaritan
The good fight.

As you would have them do unto you

As mentioned in my recent post on meningitis, by creating large, diverse groups of people, pilgrimages can present a major public health risk, and many are enormous. Each year, more than 5 million Catholics visit the Sanctuary of Our Lady of Lourdes in France. The Hajj, the Islamic holy pilgrimage to Mecca, annually draws millions of Muslims from across the globe. Perhaps the most impressive in sheer numbers is the Kumbh Mela, which occurs every three years, when Hindus travel to the holy Ganges River. During the course of celebrations in 2007, 70 million pilgrims visited Allahabad, a single city on the river’s banks, and in 2001, the movement of people was so great it could be seen from space. These incredible aggregations of people have indeed led to disease outbreaks; in fact, it was a frequent feature of the Hajj into the 20th century3.

And yet. Religious mass gatherings (a mass gathering is a large number of people attending an event at a specific site for a finite time) have overcome these very real dangers to become important examples of public health preparedness and planning in the 21st century. In particular, the Saudi Arabian government has gone to staggering lengths to address the difficulties of hosting the Hajj. Within the immediate vicinity of the holy sites, there are 141 primary health-care centers and 24 hospitals, with a total capacity of nearly 5,000 beds, including 547 beds dedicated to critical care. There are more than 15,000 doctors and nurses on staff. One hundred and thirty-six of these healthcare centers have the latest emergency management medical systems, and are staffed by over 17,000 specialized personnel. Incredibly, health services are provided at no charge3.

These herculean efforts have provided important information about institutional prevention and preparedness for mass gatherings, religious or secular (i.e. the Royal Wedding, which drew a crowd of more than 1 million people in London). The involvement of so many countries (more than 180 countries are often represented at the Hajj) has also promoted international cooperation in prevention work, and encouraged global health diplomacy3.

Epidemic disease does not always bring out the best in humanity, including religious groups. Fear can be an ugly thing. But when religious organizations are able to look past difference and disagreement and see the need of the suffering, it is an awesome demonstration of their ideals. Their work is a powerful reminder that to be good, you must do good.

References

  1. Green, EC. (2001). The impact of religious organizations in promoting HIV/AIDS prevention. The World Bank. Web. 31 December 2014.
  1. Martiniuk, ALC, M Manouchehrian, JA Negin, & AB Zwi. (2012). Brain gains: a literature review of medical missions to low and middle-income countries. BMC Health Services Research, 12:134.
  1. Memish, ZA, GM Stephens, R Steffen, QA Ahmed. (2012). Emergence of medicine for mass gatherings: lessons learned from the Hajj. Lancet Infectious Disease, 12:56-65.
  1. Osterholm, MT. “Why it’s harder to contain this Ebola epidemic”. Chicago Tribune. 4 August 2014. Chicagotribune.com. Web. 3 August 2014.
  1. Ungar, L. Ebola survivors speak of suffering, service, faith. USA Today. 8 November 2014. Web. 5 January 2015. http://www.usatoday.com/story/news/nation/2014/11/07/kent-brantly-to-speak-about-medicine-faith/18600745/

Image source: Creative Commons, http://en.wikipedia.org/wiki/Ebola_virus_epidemic_in_West_Africa