The Yale Journal for Humanities in Medicine

Spirituality, Religious Wisdom, and the Care of the Patient

Shame in the Context of Illness: An Islamic Perspective

Ahmed Nezar Kobeisy, Ph.D.
akobeisy@syr.edu

In the beginning, I would like to acknowledge the complexity and the limitations that surround this topic.The complexity arises from the intersection of the many Muslim cultures represented in the American Muslim community and the Islamic religion in ways that make religion and culture confused and defused with each other in determining the type and level of shame in the context of illness. The limitations stem from (1) the fact that shame is very little understood even as it relates to the general population for reasons I will explain later in this presentation, and (2) that attempts to understand the American Muslim community through systematic empirical research, in spite of their significant growth and diversity, are almost non-existent particularly in issues related to emotional, mental and physical health.

Introduction:

Islam is one of the fastest growing religions in the world and in the United States.  Contrary to the widely projected views that portray Islam as monolithic and American Muslims as one and the same, there is a wide range of diversity in the Islamic practices as well as in Muslim cultures. In order to address this complex issue of shame in the context of illness fairly and adequately, I find it, therefore, necessary to provide a brief description of the demographic structure of the American Muslim population and of the religious, cultural and other factors that impact, to varying degrees, shame in the context of illness.   

Demography:    

The American Muslim community in North America is composed mainly of two distinct groups: immigrant and indigenous Muslims.  The immigrant group includes first, second and third generations of Muslims who immigrated first from Greater Syria and particularly Lebanon and now includes Muslims from all parts of the world. In the last two decades, an influx of refugees from Somalia, Bosnia, Kosovo, Iraq, Afghanistan, Pakistan, and other nations began to arrive and settle in the U.S.

The second group includes African Americans as a majority, whites and Hispanics.

Muslim immigration to the United States occurred in several waves.  The first wave started in the 1800^th century and continued until World War I. Most people of the first wave were poor and working-class who assimilated in the American society. The second wave continued through the 1930s, ending with World War II. The third wave of Muslim immigration after World War II included many people from the elite of Middle Eastern and South Asian countries seeking education and professional advancement.  Although many returned to their home countries, a large number remained.  

Muslims' immigration to the United States was initiated in an effort to enjoy the benefits which the United States provides including economic and professional advancement, political asylum and religious freedom.

The Muslim population is rapidly growing mainly due to immigration, high birth rates, and conversion.

Religiously, Muslims of immigrant backgrounds can be diverse in their religious sectarian affiliation mainly to Sunnis and Shiites where both Sunnis and Shiites can be further subdivided into groups and sects.  While the Sunni subgroups are limited to four that are called Mathahib (i.e. Schools of Thought) where the differences are minimal and seen as variations rather than contradictions, Shiites subgroups are numerous and differences are fundamental and essential to each group's identity. Strong feelings about differences could lay the ground for the establishment of worship places and institutions for each group that are different from those of other groups.   

The African American Muslims can be of Sunni, Shiite, American Muslim Society, or from the Nation of Islam (Followers of Minister Farrakhan) backgrounds although the latter is considered an offshoot sect by mainstream Muslims. 

The U.S. Muslims are, therefore, as diverse as the entire world Muslim community.  Factors of diversity among Muslims can, therefore, include racial, ethnic, national origin, historic experiences, education, professional affiliation, economic status, political aspirations, and personal preferences in addition to religious sectarianism.  Furthermore, the Americanization process known as assimilation or acculturation affects various Muslim individuals to varying degrees thus constantly increasing the level of diversity. The level of acculturation among American Muslims have been found to be mainly influenced by:  

1.  Length of stay in the U.S.

2.  Education in the Unites States particularly higher education.

3.  Professional career and affiliation.

4.  Economic status.  

Longer residences in the U.S., education in U.S. particularly higher education institutions, professional achievement and high economic status have been found to speed up the acculturation and assimilation process.  

Due to such diversity, various segments of the U.S. Muslim community can be influenced differently by similar factors and consequently may develop different responses to similar situations or effects including illnesses. 

It would, therefore, be incorrect to assume that all Muslims develop similar feelings, emotions and experiences when facing similar situation. I also acknowledge the lack of research done to examine the attitude and the level of shame American Muslims may develop when facing illnesses or treatment procedures.  

Generally, it can be stated that the main influences on Muslims' views of illness and treatment include religion, cultures, and individual preferences. American Muslims, like all other groups, can be described in terms of universal, group specific and individual values and attitudes towards illnesses.  

Shame and Guilt:  

Researchers admit that Shame is little understood and discussed.  According to Potter-Efron & Pottor-Efron (1989):  

Some of the reasons for this neglect are historical accidents.  For example, Sigmund Freud, the founder of psychoanalysis happened to focus his attention on guilt rather than shame.  Later, anthropologists thought that guilt was a higher level, more sophisticated feeling than shame.  They assumed that advanced Western societies did not have or need shame. (p. 1).[i]

Shame is often defined as painful emotions aroused by the recognition that one has failed to act, behave or think in accordance with the standards which one accepts as good.  The same feeling is aroused by similar failure in others with whom one identifies oneself. Because shame is equated with dishonor, disgrace and something that brings regret, censure or reproach, Shame is often associated with conscientious of guilt, shortcoming, or impropriety. It, therefore, leads to the assessment that the current situation affects negatively one's identity[ii].   

According to Islam, bashfulness is a required characteristic of the human function which is considered valuable if used in moderation and as a preventive mechanism against the engagement of shameful actions and events. Shame that results from exposure to embarrassing or shameful situations can result in either physical or social actions or both.   The physical actions include looking down and blushing while the social ones include hiding from people and withdrawal. 

Guilt, however, can be defined as having committed a legal offense, or transgressed the moral law or breached the ethical or professional code of conduct.  

The importance of understanding shame is the fact that research findings have collaborated in supporting the existence of a strong correlation between one's own developed meanings of illness, feelings about illness and treatment, and the way one expresses such feelings with one's response to treatment. Such personal feelings and expressions have been found to affect the immune system and consequently affect the course and outcome of treatment.  

Each American Muslim, in general, can be understood as sharing universal, group and personal meanings and feelings about illness and medical treatment.

The feeling of shame, therefore, can vary in level and expression depending possibly on the following factors: gender, age, type of illness, way treatment is provided, and the social, religious and cultural environment of the patient.  

Religious and cultural factors that may cause shame in illness:  

1.          The way patients and their families view illness:  While some Muslims view illness as a test from God to examine their submission to His well and, at the same time, as an opportunity to seek rewards and expiations for their sins, other Muslims view illness as a punishment from God for their past wrong doing. Individuals from the latter group are likely to feel ashamed of their illness which is, in their own minds, indicative of their sinfulness.  

2.          Illness as a cause of dependency: when illness causes patients to be dependent on others for usual daily needs and basic necessities, particularly for an extended period of time, the patient is likely to feel ashamed and less dignified.  

3.          The type of illness: while internal illness may not cause shame, social and visual illnesses may bring a great deal of embarrassment and shame to the patient particularly those linked to life-style practices such as sexually transmitted diseases, HIV, and sexual dysfunctions.  

4.          Mental illnesses have been always seen across many Muslim cultures with stigma and shame associated with them.  

5.          Terminal illnesses: for both religious and cultural reasons, most Muslims would not want to communicate the diagnosis of terminal illness to their loved ones.  They would feel ashamed to inform the patient with such bad news.  In such cases, shame is considered one of the feelings and emotions that the patient and his/her family members develop as a defense mechanism.  The sequence of reaction ranges from uneasiness, a need for reassurance, denial and minimizing, anger and blame, guilt and shame, confusion and finally the acceptance of reality. Patients themselves feel ashamed for being inflicted with such diseases.  

6.          Illnesses that result from the violation of religious values or cultural norms can also produce shame. Alcoholism and out of wedlock pregnancy are but a few examples.  

7.          Uncovering one's body:  The Islamic religion commands modesty and specifies general criteria for what men and women can wear in public as a manifestation of modesty and respect in public. Men and women, for instance, are discouraged or even prohibited from uncovering their bodies, to various degrees, in the presence of related or unrelated members of the opposite sex.  Spouses are exempted.  In illness, many Muslim individuals reported feeling ashamed for being forced to uncover, sometimes, unnecessarily or longer than it is necessary. The complaints included the way the instructions are given (e.g. commanding and humiliating tone), lack of explanation as to why it is necessary to uncover, and the lack of accommodation for Muslim patients.  

8.          Discrimination:  Stereotyping Islam and Muslims is commonplace particularly in media, workplace, schools, etc. Such negative images and stereotypes have paved the way for institutional discrimination which has been cited as one of the forms of societal shaming practices.  Whether discrimination is real or perceived, Muslim patients may translate such discrimination into being labeled as being defective, deficient and unworthy, all of which are shaming messages.  

9.          Illnesses that are related to intimacy and infertility. Both Islam and most Muslim cultures value and respect the confidentiality of private life.  Shame is likely to be prevalent if the Muslim patient is forced to uncover details of intimate and private life that may expose one's own self or other related ones let alone faulting one's self or relatives. The feeling of shame could be intensified for having exposed one's own weaknesses and for violating the confidence of loved and respected ones.  Illnesses related to sexual inadequacy, impotence, and infertility for both men and women are considered shameful in most Muslim cultures and looked at as signs of defectiveness and deficiency in one's manhood and womanhood.  

10.     Excessive demand for personal information that may reveal weakness or inadequacy (e.g. unemployment for males, not having children for both men and women particularly of married women, poverty, lack of family support, or lack of adherence to religious or cultural norms) may produce shame in Muslim patients that takes roots in either religion, culture or both. Recent immigration, refugee status, low income and less education could intensify such feeling. 

11.     Lack of friends and family presence on the bedside could be shameful especially for families who have been accustomed to living with their large extended families.  Muslims value close family ties among members of the extended family which in turn serve as strong social support system.  In most Muslim cultures, patients are always surrounded by relatives for support and service.  Furthermore, individuals are accustomed to bragging about the strength of the support they receive from their families. In the United States, most Muslims, whether immigrants or converts, lack the existence of family support systems for many obvious reasons including immigration policies, economical reasons, and religious differences as in the case of converts.  

12.     The cultural pressure which focuses on image and appearance could be the source of shame for the patients who do not fit this image.  Failure to have the perfect body image or to display the correct public etiquette is likely to cause embarrassment and shame.  This includes issues like overweight, disability, dependence on others for basic needs among other things.  Fear of not adhering to the rules of the medical personnel or institutions is likely to cause shame as well.  

13.     Gender interaction is a highly sensitive concern among Muslims that may produce shame if not observed correctly. To explain, male's affection and attention to female patients often cause shame and possibly concern for the female and her family to a higher degree more than that of the female medical staff showing the same with the male Muslim patient, although both situations could produce shame to the patient.  Direct touching and affectionate expressions should, therefore, be avoided.  Direct eye contact may be seen as threatening and/or expressive of sexual feelings or interest.   

14.     Invasive and intrusive medical procedures particularly those that relate to the examination of the patient's private parts could be seen by Muslim patients as shameful.  For men, it may be seen as humiliating and ill-driven especially when it is not well explained and/or un-necessitated medically.  For women, if vaginal examination or delivery done by a male without medical emergency, it may cause shame to the patient and family.  It would be helpful if the medical personnel inform the patient of the procedure, the purpose and the gender of available staff for such procedure and allow the patient to freely express his/her preferences not only as to what can be done but also as to who should they feel comfortable with doing it.  

15.     The tendency in the medical field culture that assigns responsibility and blame to the patient as explanatory for the cause of illness.  According to this model, the patient is responsible for the onset, and outcome of the medical condition Finerman and Bennett, 1995). According to Finerman and Bennet (1995):  

While many behavior-disease links remain more statistical correlation than demonstrated causal agent, health impairment is commonly seen as a consequence of indulgence I risky or 'unsafe' behavior, be it unsafe drinking, unsafe diet, unsafe exercise, unsafe sex or a host of other risk-taking activities" (p. 1).[iii]

These practices are counterproductive in many ways as follows:  

(1) They affect social, economic and health policies at the expense of the patient. Policies based on the accusation and explanatory driven model, tend to deny the patient "the sick-role status" thus depriving them from benefits they would be entitled to otherwise.

(2) They limit the patient's control over medical choices available thus leaving the patient fighting both the threat of illness and the social stigma, and 

(3) They simplify the outlook at illnesses by ignoring the fact that illnesses are caused by many factors; genetics, social, cultural and medical among many other factors thus overlooking the necessity of taking a holistic approach to the patient instead of the very limited explanation with little or no attention given to the contextual and synergistic factors important in the etiology, prevention, amelioration and healing of a particular disease.  

Although the awareness of the multicultural perspective and conceptualization of illness seems helpful in enhancing the chances of success in dealing with illnesses and with patients, it is not without risk.  The risk, however, is as Finerman and Bennett (1995) describe it in the following:  

As health providers are made more aware of the culture specificity and meaning of illness in Western and non-Western populations, some are further convinced that alternative values and practices are the products of ignorance or superstition and serve as barriers to successful treatment and medical change.  Research in the social and behavioral sciences must more effectively articulate not only the distinctiveness but also the utility and adaptive value of context-specific systems which link pathophysiological processes, environment, belief, behavior and health (p. 2)[iv].

Michelle E. Friedman, "Shame and Illness - A Jewish Perspective"
Shame: Introduction
Table of Contents

Published: September 17, 2004