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9/22/17 - "But You Look Fine: Exploring the Impact of Interpersonal Relationships in the Lives of African American Women Living with Lupus" by Kesha Morant Williams

But You Look Fine:  Exploring the Impact of Interpersonal Relationships in the Lives of African American Women Living with Lupus

by

Kesha Morant Williams is an Associate Professor of Communication Arts & Sciences at Penn State Berks.  She received an ARC research grant in Fall 2014 for her project entitled "African American Women Discuss Living with Lupus".

Background

Living with a chronic illness such as lupus can be a frustrating and isolating experience because the undetectable symptoms make it difficult for diagnosis, which often leads to disbelief that the illness exists. Some patients have been accused fabricating or exaggerating their health condition. Patients often feel isolated because they experience their suffering alone (Gallop, et. al, 2012; Vickers, 1998). In addition to isolation, for many people, lupus also causes a biography disruption. Biography disruption is the idea that chronic illness affects daily life, individual identity, self-reliance and personal relationships (Bury, 2008). Illnesses, such as lupus, introduce discontinuity in a person’s life trajectory. People living with lupus sometimes have to adjust or recreate their identity. According to Jackson, Glenn and Morant Williams (2012), people pay particular attention to and think about their identity during times of crisis or if they are displaced. Illness complications might require a person to change careers, forgo having children, or renegotiate their educational goals. For many people, the unpredictability of the illness experience disrupts their ability to engage socially. Additionally, many people adjust to a measured lifestyle (Lowe & McBride-Henry, 2012). This newly renegotiated identity leaves people who are living with the invisible illness analyzing what has been lost from their old identity, what remains the same, and what is new?

Lupus & African American Women

Although African American women are diagnosed with lupus more than other populations, there is limited research about the experiences of African American women living with lupus. Some scholars argue that recruitment barriers limit lupus research in communities of color. African Americans, in particular, have been leery of participating in any medical research because of unethical practices directed toward people of color (e.g. Tuskegee Syphilis Experiment, efforts to sterilize American Indians) (George, Duran & Norris, 2014).

Others argue that until recently efforts have not purposefully included African American women. Nevertheless, African American women are three times more likely to receive a lupus diagnosis than white women. Also, African American women diagnosed with lupus develop the disease at an earlier age and have higher rates of lupus-related deaths than their white counterparts (Barnado et. al, 2012). Equally discouraging, the first lupus drug to be approved by the FDA since 1955 is least effective for those with the greatest need. “In 2 of 3 studies, fewer blacks/African Americans who received Benlysta responded to treatment compared to blacks/African Americans who did not receive Benlysta. Therefore, caution should be used when considering treatment with Benlysta in blacks/African Americans,” (Benlysta, 2016, para. 6).

Lupus advocates have fought tirelessly to increase visibility and awareness of the disease. A considerable increase in government funding for lupus research occurred under Obama’s administration. For example, The Consolidated and Further Continuing Appropriations Act of 2015 provides significant funding for lupus research and educational programs. Through this act, organizations such as the Office of Minority Health, National Institute of Health, Center for Disease Control and Prevention as well as the Department of Defense’s Peer-Reviewed Medical Research Program can continue working in this area (LFA, 2015). Also, the Lupus Research Institute (LRI) has made it a priority to eliminate racial disparities related to lupus. The LRI strives to decrease the disparity through partnerships with the Congressional Black Caucus (CBC) Health Braintrust (CBC, 2015; LRI, 2012).

Social Support

Living with a chronic illness can be a lonely and isolating experience; however, these feelings of loneliness and isolation are often lessened through social relationships (i.e. social support of family and friends). Boss & Couden (2002) assert that chronic illness affects families in many ways including ambiguous loss. Ambiguity means that there is a lacks traditional loss markers (living in periods of illness and wellness, no finality) which leave both the ill person and their support system stuck devoid from movement.

Also relevant to this research, social support among African American women is usually higher than social support among other people groups (Czekalinski, 2012; Garrett Stodghill, 2012; Thompson, 2012; Williams & Jackson, 2013).  Nevertheless, this coupled with the Strong Black Woman (SBW) narrative can leave the black woman overburdened and silenced.  The SBW narrative presents the Black woman as strong, self-sufficient, and resilient in all situations. This damaging narrative directly impacts the ways in which Black woman communicate about their health experiences (Matlock Gattison, 2015). Therefore, it is reasonable to explore the role of social support in the experiences of African American women living with lupus.

Findings/Discussion

This research provides a platform that recognizes that “science gives us a way of thinking about disease, but the arts and humanities provide insight, context, and understanding of what it means to be ill. Diseases are black and white, described by facts, figures, categories, and concepts, but illness is coloured, nuanced by context, and shaped by individual circumstances” (Fergus Shanahan, 2012, para. 6). While many narratives privilege the biomedical perspective, based on interviews and survey responses of over 100 women this research offers the alternative; a collection of stories based on the non-privileged storyteller (i.e. the women).

At present, I have completed a significant amount of the background research, and am currently analyzing the findings. I have collected over 100 surveys and open-ended questionnaires.  After unpacking dominant themes within my data set, I will develop a framework for publications. The study focused on the research questions:

-          In what ways do interpersonal relationships impact the health of African American women who are living with lupus?

-          In what ways are interpersonal relationships impacted by the affects of living with a chronic illness?

The dominant themes that have emerged, at present:

-          Impact on African American/Black women

-          Social Support: Interpersonal Relationships

-          Reduced Social Health/Social Interaction

-          Role of Religion/Faith

Brief Analysis/Discussion

Interpersonal relationships help lessen loneliness, allows a person to be a part of something outside of herself, in addition to feeling cared for, protected and loved. People with strong interpersonal relationships are healthier and experience greater levels of personal happiness (Umberson & Montez, 2010); those without strong relationships are more likely to experience depression, physical illness and isolation (Newton, et, al., 2013; Upton & Upton, 2015).  When linking these facts with the weight of a chronic illness one might embrace the benefits of interpersonal relationships without considering all factors. For example, interpersonal relationships put pressure on people to reduce their private self and expose their vulnerabilities, particularly when illness is involved. This transparency is appropriate and necessary in the context of a supportive and caring relationship. However, it can also be detrimental to a newly established, stressed or deteriorating relationship (Senden, et. al., 2015).

The discussion surrounding feelings of isolation and social support also presented perspectives not commonly addressed in the literature. Substantive research affirms that social support is beneficial to a person living with chronic illness. Research also supports that, in many cases, the caregiver ends up with poorer health that the person for whom they are caring.  However, what is missing from the discussion is the ill person’s feelings of isolation even when physical support is present.  

It is plausible that the isolation referenced by the participants stems from a lack of understanding. This study revealed that even those who are living with lupus sometimes struggle with understanding the disease and its impact on their lives. Therefore, it is reasonable that family members do not immediately know how to support their loved one. Although participants asserted that well-meaning family members missed the mark at times others were encouraged by improvements in the types of support over time.  The growth in support was most often noticed in long term (typically in marriage) committed romantic relationships; while the shift was less apparent in parent-child relationships. 

Whether it was to be a better parent, wife, student, or employee all of the participants were motivated by the belief that this illness experience will lead to something positive. The examples linked to motivation suggested that unwavering support of family members and the responsibility of motherhood had a positive influence on the women’s health and ability to thrive. This study builds upon research which asserts that social support among African American women is higher than any other people group. However, it is important to note that the motivation theme also reflects the SBW narrative. Even when living with a chronic illness, the women privileged their family over their health and were deeply concerned with supporting their families while limiting the impact of the disease on their loved ones.

Theoretical Implications

A wealth of research supports that the quality of interpersonal relationships is an important predictor of a person’s ability to adjust to living with an illness. This is of particular importance when exploring the intersections between interpersonal and health communication. An implication of this study is the necessary link between social support and understanding. The discussion suggests that social support not coupled with an appropriate understanding of the ill person’s needs it is useless and at times detrimental. This coupling is particularly challenging when connected to a chameleon disease such as lupus. Until recently lupus had minimal public exposure and research funding. Awareness of the disease was typically limited to people living with or supporting someone who is living with the disease. Though lupus advocates have made significant strides over the last few years, the general public has little to no understanding of the chronic illness. While there is no prescribed script for social support of any chronic illness, family members and society, in general, have a clearer understanding of illnesses with a larger public presence and a clearer list of signs and symptoms (e.g. cancer). Those living with lupus and their caregivers must be cognizant of the fact that there is no model to follow for lupus as the disease can impact each patient in completely different ways.  Further, it can affect the same patient/family member in vastly different ways from day-to-day. This means that the necessary types of social support are varied and ever-changing.

Another implication of this study links to the ways in which social support among African American women and the SBW appear to influence the participant’s interactions with her family. Masked as resilience and perseverance the participants shared their SBW narratives as they discussed pushing through, ignoring their bodies warning signs, and paying for going beyond their physical limits – for their family. In other words, while the women acknowledge their family’s support, they still live within the SBW narrative by privileging the desires/needs of the family over their own leading to an unbalanced interpersonal relationship. The lack of reciprocity in an unbalanced interpersonal relationship typically leaves one relationship partner physically and emotionally exhausted and is detrimental to the woman’s overall health as well as their interpersonal relationships.