It's better to light a candle than to curse the darkness

Our emotions are present when discussing any infectious disease.  Discrimination may be very blatant or very shuttle. Imagine this-sitting with a group of your friends and you tell them that one of your very good friends was just diagnosed with HIV/AIDS.  One member of this group will reply "Well, how did he get it?"  That simple statement implies that somehow, this person must have done something to become infected by this disease.  Comments like this are never stated with someone with cancer, yellow fever, cholera, etc.  So what sets HIV/AIDS apart from other diseases-people equate  HIV/AIDS with being "gay."  Even though many heterosexual individuals are infected with the disease.  People believe that you must look ill to be ill.  "He doesn't look sick.  Is he?"  People with mental illness face this same problem. 

Stigma is a difficult and sometimes evasive attitude to understand.  Stigma is about discrimination, depriving those less fortunate of the rights as human beings.  It is about the perceived separating of good people from bad, hate from justice.

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Throughout History, people who were infected with some unknown illness were Stigmatized.

"blaming is as old as Thucydides' blaming the Peloponnesians for the Athein Plague and as contemporary as the moral majority's blaming gays and IV-drug users for AIDS"

This was true for leprosy, cholera, mental illness physically handicapped, and epilepsy.  A separation or distancing occurred with each illness in various ways.  With Leprosy a total separation from healthy individuals was very common practice.  People fled from towns when outbreaks of Cholera occur.  Many people have come up with various reasons for someone to have become infected in order to give themselves are sense of self protection from the disease.

A Song of Stigma from Jony Jerusalem (One of the most outspoken AIDS activists in Israel. He has documented his battle with the illness on Web sites and through Internet forums and has lectured in schools.)

"The disease (Cholera) only strengthened belief in God and reinforced the idea that sin caused disease.  Doctors even started supporting this idea that the United States was losing its favor with God since there were so many non-believers, Catholics, and Immigrants that were sinners.  The also liked to point out that mostly filthy and poor people died during the epidemic"

"Whether free or slave, Americans believed, The Negro's innate character invited Cholera.  He was, with few exceptions, filthy and careless in his personal habits, lazy and ignorant by temperament.  A natural fatalist, moreover, he took no steps to protect himself from disease shared, to an exaggerated extent, the distaste of the poor for hospitals and the medical profession."1

The issue of Stigma is at the core of many of the issues that surround infectious diseases.  As a society, we do not want to talk about anything negative about our lifestyles or personal behaviors, especially, if it is regarded by our society as being taboo.  Being positive for either Hepatitis C Virus or HIV/AIDS, for many, means that somehow becoming infected was a matter of lifestyle choice or personal behavior.  Not only people with Hepatitis C Virus or HIV/AIDS but with epilepsy as well.

Lisa Francesca Anderman, MP from the book Epilepsy in Different Cutlures, wrote:

"A Henan study found many negative attitudes towards people with epilepsy among the general population: 87% would object to having their child marry someone with epilepsy, 57% would not let their child play with a person with epilepsy at school, and 53% believed that people with epilepsy should not do the same jobs as others."

The Native North American Tewa consider breach of tabu, or any digression from the ideal way of life, to be the primary explanation for disease, followed by intrusion, contagious magic and witchcraft.  Mother of children with epilepsy often blame themselves for having had bad thoughts or actions during pregnancy which could have caused the illness.  Among the neighboring Navajo population, grand mal seizures are thought to be the direct consequence of sibling incest, thus representing STIGMA for the entire family.

"The same holds true for mental illness.  150 years ago in this country many religious groups felt that if you had a child with a mental problem, this was a sign from God you had regressed against God's laws. The sins of the father would carry over to his children.   The fact that yur child had a mental problem showed to the world that you had broken one of God's laws.  The stigma was so horrific that many times the child would be killed to remove any evidence of this transgression."

"In all probability, most New Yorkers, if they had been asked in 1831-1832 what they believed to have been the cause of Cholera, would have answered that cholera/disease was some form of righteous consequence which afflicted those who were least likely to be in God's grace.  As further proof they would cite that Cholera most often affected those persons who lived dissolute, alcoholic, drug related, sexually excessive, and filth ridden lives; cholera's victims were simply being punished by God.  It was the consequence of sin and "was the inevitable and inescapable judgment" of the Divine Power.  Cholera was a scourge not of mankind but the sinner"1

The discrimination or stigma that is associated with Hepatitis C or HIV/AIDS is best characterized from this article From the February Hepatitis C Virus Advocate by Alan Franciscus, Editor in Chief.

"Hepatitis C (Hepatitis C Virus) is a highly stigmatized disease.  Revealing a diagnosis of Hepatitis C Virus can cause anxiety on a number of levels.  The ramifications of this disclosure can impact medical, marital, family, insurance and other area of one's life.  Common feelings that people experience when considering disclosing their Hepatitis C Virus status include:

·         Fear of disclosure to family and friends as well as disclosure in the employment environment

·         Fear of seeking medical treatment and having Hepatitis C Virus documented in their medical records

·         Fear of denial of health and life insurance

·         Fear of infecting loved ones

·         Fear of dying

·         Fear of being viewed as a disease rather than as an individual

·         Fear of losing control over bodily functions and life

·         Fear of "losing employment"

"From the media it appears that AIDS is one of the diseases that people dread the most, though from discussing with different people we can find that the attitudes to patients with AIDS, as for other diseases, vary widely.  However, about one sixth of the 6000 persons who answered the International bioethics survey in the ten countries said that their feelings towards persons with HIV depend on how they contracted the disease, and that if it was acquired through the use of drugs, or thorough sex, it was their own fault.

In all countries people made distinctions between so-called "innocent" and "guilty" persons.  Only one comment actually mentioned the term guilty, "if the patients got it because they did something to have a guilty conscience, it serves them right.."  How do we assign people to a guilty category in our mind?  Some people use religious criteria, others used sexuality, others use of illegal drugs.  These groups may all be associated with behavior that is against someone's morality, and many of the people who gave negative comments were judgmental of other's lifestyle.  This type of reasoning may also attach much stigma to the people with AIDS."

"There is evidence that the sigma associated with AIDS deters people at risk of HIV infection from seeking testing.  Delayed testing, in turn prevents people with HIV from seeking early treatment for HIV disease and counseling on reducing the risk of exposure for others."

"Peoples reactions are a way of establishing a sense of control and invulnerability in the face of a deadly disease. People may overcomes their initial negative reactions when they consider the value that they themselves or others assign to non-prejudicial behavior. One study found that people adjusted their reactions to having lunch with a little girl with HIV but not to having lunch with a person addicted to drugs.

While every newly emergent disease has a learning process of first stigmatizing those infected because of a possible lifestyle behavior, the first thing to do is realize that those who are positive need understanding not condemnation.  By reducing the stigma associated with Hepatitis C and HIV/AIDS, money for research, medical assistance, and support from the general population will occur.

1.  The 1832 Cholera Epidemic in New York State 19th Century Responses to Cholera Vibrio By G. William Beardslee

2. Aids and Stigma in the United States: http://www.aidslaw.ca/Maincontent/otherdocs/Our Sponsors /FallWin99review.htm

"To explore the relationship between stigma and public health, examine the social and cultural determinants of stigma, explore how stigma prevents people from seeking or getting treatment for disease, and determine future research opportunities, the Fogarty International Center (FIC), in partnership with other National Institutes of Health (NIH) Institutes and Offices, U.S. agencies, and domestic and international organizations (see list below), announces a major international conference oriented toward developing a research agenda that will lead to the mitigation of the impact of stigma on individuals and societies. Such an agenda would be expected to include activities designed not only to better understand stigma's social and cultural determinants but also to identify and test ideas for effective new behavioral interventions.

Our story

Stigma has been defined as a deeply discrediting attribute that reduces a person to one who is in some way tainted and can therefore be denigrated. It is a pervasive problem that affects health globally, threatening an individual's psychological and physical well-being. It prevents individuals from coming forward for diagnosis and impairs their ability to access care or participate in research studies designed to find solutions. Much attention has been paid to the plight of the stigmatized, including those with AIDS or suspected to have AIDS, those with leprosy, and those suffering from mental health disorders. But stigma goes beyond these disorders to include some health conditions that are no longer stigmatized in the developed world but continue to have an impact in resource-poor countries.

Action has been slow in coming. Little is known about how pervasive the problem of stigma is in the developing world and about how health care systems can work to tackle its negative effects on individuals and societies." from Stigma and Global Health: Developing a Research Agenda

Additional articles can be found under the following sub-topics:

Hepatitis

HIV/AIDS and stigma (A thru H)

HIV/AIDS and stigma (I thru Z)

 Impact on Relationships

Medical Stigma

Miscellaneous Articles on the Stigma of Infectious Diseases (A thru L)

Miscellaneous Articles on the Stigma of Infectious Diseases (M thru Z)

Public Health issues and stigma (A thru L)

Public Health issues and stigma (M thru Z)

Sexual Issues

Social Security Insurance

Statistical Research on Stigma Issues

Stereotypes

This website is dedicated to my wife, whose belief in this organization and the understanding that through education, understanding about infectious diseases, changes people's perception towards those who are positive.  And that this change assists those infected in a positive way.  For this support I am truly grateful and thankful that I married her and love her still, for all these years. JEH