HIV, Stigma and Me: One Woman’s Story

Abstract

The human immunodeficiency virus (HIV) attacks the body’s immune system by destroying cells which fight disease and infection. If left untreated, it can lead to AIDS (acquired immunodeficiency syndrome) (1). African American women represent 13% of the total female population in the United States and account for 61% of new HIV diagnoses (2). There are various types of stigma associated with HIV (3). Enacted stigma refers to an individual’s experiences of prejudice and discrimination because of their HIV status, whereas, internalized stigma refers to an individual’s acceptance of negative attitudes of beliefs related to their HIV status (4 ). A positive status, can affect individuals on a daily basis as it relates to stigma. For example, guilt, shame, isolation, or perhaps low self-esteem. HIV does not discriminate. Individuals across all races, ethnicities, and socio-economic status have been diagnosed as HIV positive.

The HIV epidemic remains worldwide, disproportionately impacting African Americans. The focus of this paper is: 1). To bring attention to HIV in African American women in the United States 2). To bring attention to stigma associated with HIV in women 3) to highlight an African American female who has been living with HIV for close to 30 years.

Millions of people throughout the United States have been affected by the Human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) since the mid to late 1970s (5). According to the Centers for Disease Control and Prevention (CDC), advancements have been made in the prevention and treatment of HIV/AIDS; with proper medical care, HIV can be controlled, but not cured (6). Women account for 20% of people living with AIDS (PLWHA), yet 62% of these women identify as Black/African American (6). There are several contributing factors to elevated rates of HIV among Black women, including increased injection drug use, non-monogamous sexual relationships, exchanging sex for drugs or money, and history of incarceration; partner behavior; and social and contextual factors, including lower socioeconomic status, poverty, and higher rates of HIV/AIDS in general in the Black/African community (5).

African American or Black women living with HIV face numerous challenges on a daily basis. Some of which are inclusive of; stigma, racism, homelessness, financial struggles, discrimination of various sorts, mental illness, hunger, and the list goes on. In a study conducted in 2016, data were collected through in-depth interviews with African American women living with HIV (WLH) in South Carolina (SC). The study aimed to identify resources at various socioecological levels that facilitate resilience and explore how the resources interacted with each other. The results were inclusive of participants describing six major resilience resources including: internal strength, religion and spirituality, hopefulness about life and future, self-awareness and self-care, social support from family and community, and HIV-related health facilities. Findings suggest that resilient African American WLH maintain hope in the face of adversity and seek and obtain social support (7). Though stigma was not a component within the study, it has a tremendous impact on WLH.

HIV related stigma is real and affects Black women in a number of ways. Stigma impacts the health and social well-being of people living with HIV/AIDS (PLWHA). Internalized or self-stigma takes into consideration the extent to which an individual internalizes negative beliefs about a personal characteristic or experience such as HIV/AIDS. Additionally, stigma from the general public, such as negative attitudes or beliefs about PLWHA and discriminatory behavior are experienced and potentially internalized (8). For example, an individual may view herself as having moral or character weaknesses or being a failure due to messages heard from family, friends, community members and the media. This can possibly lead to reduced self-esteem and increased hopelessness. Internalized stigma may further lead to impairment in social and occupational functioning and impact treatment engagement (8).

According to Earnshaw and Chaudor (2009), overtime, PLWHA may begin to anticipate future prejudicial and discriminatory experiences. This anticipated stigma can lead to worsened mental and physical health, social isolation, fear or reluctance to disclose their status to others, internalized stigma, and hesitancy to engage in HIV treatment.

The Social Cognitive Model is a theory which explains the development and persistence of HIV stigma. This model further suggests that an individual may initially become aware of negative beliefs about PLWHA early in life prior to contracting HIV. When an individual sees themselves as belonging to a stigmatized group, over time their personal cognitive coping style may lead them to accept negative beliefs about PLWHA as being either true or valid (5). For Black women, internalized and anticipated negative beliefs about HIV status can further be compounded by negative beliefs about being a racial and gender minority in the United States(5).

Cheryl’s Story

An African American woman who was not a participant in the aforementioned study allowed me to interview her. She is a native of North Carolina (NC) and HIV has lived with her for close to 30 years.

Cheryl, in her early 50’s, is the epitome of resilience. Cheryl and Duane meet on a job in NC during the late 1980’s. They quickly become friends then soon decide to date exclusively. The relationship progresses in a positive manner, so they decide to live together. A short time later Cheryl accepts a job offer from Clemson University and the decision is made to move to South Carolina (SC). There is talk of marriage, but no definitive plans are made at this time. This is a young couple in love, happy, and enjoying life. As Cheryl is working at Clemson, Duane has begun working at a corrections facility not too far from where they live.

The road is relatively smooth with a few bumps and curves every now and then. Both Cheryl and Duane have settled into their respective jobs and enjoy what they are doing. They reside in a quiet community and have established friendly relationships with neighbors. However, that smooth road becomes extremely hilly and curvy in 1994.

Duane walks in the house one evening after work and informs Cheryl that he has tested positive for HIV. She was caught completely off guard. Utter shock. However, she immediately begins to comfort and console him. They sat quietly on the sofa and talked. During this conversation Cheryl learned that a prisoner spat on Duane while working. According to standard procedure, as an employee of the facility, Duane was required to be tested for HIV (blood test). Needless to say, this was a sleepless night for both of them. Duane managed to hold it together the next day when he returned to work. Cheryl went to work as well knowing that she also needed to be tested.

Cheryl (Duane accompanied her) went to the local health department to be tested approximately two weeks later. Rapid testing was not available at that time, so there was a one to two week waiting period for the results. Upon receiving the results, it was determined that Cheryl is HIV positive (+) For her, this is confirmation of the symptoms she was experiencing that something was amiss from a physical perspective. Confirmation, yet time for a long pause.

Duane and Cheryl are living in Anderson and have recently found out that they are both positive. Life changing for sure. So many questions and too few answers. The fear of the unknown was legitimate. They are in survival mode from one day to the next. Daily thoughts at the time consisted of, “not letting family and friends know, the secrets, If I have a dental appointment do I have to let them know, since they will have to take precautions?” Living with the reality of “What if?” Awakening one morning yet not knowing whether or not today would be their last. The strength, the power of a virus that is invisible to the naked eye.

The stigma. Living in Anderson which was a small city at the time and not wanting people to know. The health department conducted the testing, provided results and subsequently dropped the ball there. Now what? A doctor or doctors are needed. Who? Where? Can this person or persons be trusted?

In a short period of time they chose a physician located 40 minutes from Anderson. You ask why so far away, the STIGMA! There was no desire to come into contact with anyone whom they knew. In the early to mid 90’s, media portrayal of the virus was horrible. People were portrayed as lepers had been. There was so much shame associated with the virus; rejection and ostracism. The thought of being “found out” was stressful by itself.

There was little to no confidentiality. Imagine walking into a doctor’s office with an appointment. As your name is called, you are asked which clinic you are going to. For example, if your response is “ID” (Infectious Disease), people within hearing distance begin making all kinds of assumptions. Incidents similar to this one occurred at various facilities. There may be a policy regarding Patient Right to Privacy (HIPPA), but what happens if a relative or someone you know works in this establishment? So much for confidentiality.

From a medical perspective their experiences were like a rollercoaster ride. Though they were under the care of a physician, this individual was not a specialist. The initial treatment plan for both was AZT (Zidovudine also known as Azidothymidine). AZT is an antiretroviral medication used to prevent and treat HIV/AIDS. There was no cocktail at the time. They were on this medication for close to two years. They were temporarily getting better but not significantly. Over a period of time, both were affected negatively while taking it. Cheryl experienced fevers, nausea, yeast infections and an extremely low blood count several times. She also experienced blood loss. Duane experienced many symptoms as well, with the most severe being difficulty with balance and a brain infection which came close to taking his life.

Both Duane and Cheryl were in and out of the hospital numerous times. The most serious being Duane’s brain infection and Cheryl having pneumonia which is common in people with HIV or AIDs. Pneumocystis Pneumonia (PCP) is still the most common opportunistic infection which occurs more often or is worse in people with weak immune systems.

In spite of numerous hospital visits, they both continued to work. However, they also began discussing leaving SC and returning to NC, which was home for both of them. While still in SC, they made the decision to get married. Yes, they were in a committed relationship and had been for some time, but there was the underlying sense that according to Cheryl, “No one else would want them.” Prior to moving, a lot of decisions needed to be made. Since they had missed a lot of work, a burning question was whether or not there was a need to disclose any information. Neither Duane nor Cheryl had informed their parents at this point. When and how were they to be informed?

Cheryl took the lead on breaking the news to her mother through a telephone conversation. Her mother was very encouraging and supportive. Prior to this conversation, she did not understand why there was a need to relocate to NC since they were settled into jobs and communities where they were. However, in talking with Cheryl, there was enlightenment as to the frequent doctors and hospital visits. This was the ‘aha moment’ for her mother. There is nothing like a mother’s love. Cheryl’s father on the other hand showed no emotion and never spoke with her about her positive status. This was not by any means a display of rejection but rather his normal response to most family matters. Cheryl has 12 siblings and her mother informed them in her own time and manner of Duane and Cheryl’s status. Duane’s parents and sibling were encouraging and supportive as Cheryl’s mother had been.

Before leaving Clemson, Cheryl was hospitalized again. This time she was placed in isolation because it was believed that she might have Tuberculosis (TB). The word spread like wildfire! Her colleagues at Clemson went into panic mode because they had been in her presence. TB is also an opportunistic infection which occurs more often in people and being more severe in those with a weakened immune system. Did Cheryl have TB? No!

Cheryl decided to leave Clemson on disability. The filing process was initiated in Human Resources. In the midst of all of the paperwork, her diagnosis was disclosed. Cheryl knew some of these people due to the type of work she was doing. Therefore, she also knew that they were talking behind her back. Where was the confidentiality in all of this? There was none, or very little.

Cheryl has always been an individual to speak the truth. With this experience she preferred that people speak directly to her as to what was going on, as opposed to talking behind closed doors. It took a significant amount of time before she felt the freedom to be open, unveil, be unashamed and share her truth.

The move was to Fayetteville to live with Duane’s parents. Three or four of Cheryl’s siblings drove down to assist with the move. There was no rejection, fear, isolation or negativity from either family.

Leaving SC was an excellent choice. While in Fayetteville, they are able to spend quality time with Duane’s family in addition to a sense of normalcy. From the medical stand point, Duane and Cheryl began their care in the Duke University hospital system. No more general practitioners, but instead doctors specializing in infectious diseases. Unfortunately, the drive to Durham was even longer, being an hour as opposed to 40 minutes. Cheryl no longer feels like a guinea pig. While in Anderson it was, “Let’s try this, or this”. She was adamant about her healthcare and was her own advocate. Healthcare played a huge role in the decision to return to NC and the availability of receiving treatment from specialists. She never felt as though she was discriminated against or ostracized while being treated. However, the issue of confidentiality was also prevalent at Duke.

Cheryl eventually realized that being on disability was a crutch after about a year. Her ultimate trust and confidence had to be in God, that He would take care of her and supply all of her needs. Cheryl admittedly had no relationship with Christ prior to the diagnosis. This was her “Thorn in the flesh”. She further states, “It definitely did not happen overnight.”

Cheryl and Duane are in Fayetteville for close to two years. Throughout this time, they see God at work in their lives. They are feeling better and are experiencing a calmness that was nonexistent for some time. A home became available in Durham, so this move was made. A new location, new jobs and resettling in. Cheryl loved her job (working as an accountant) and slowly began becoming active in her community and taking a class or two as well. She became so wrapped up in work, that she without realizing it at the time began ignoring self-care. There were a few times on the job that a supervisor spoke to her about an assignment, and Cheryl’s thinking was, “Why are you so concerned about this project when I am dealing with living with HIV on a daily basis?” She did not participate in any support groups. She was frustrated and at times upset and began projecting these feelings onto others. During this time, Duane began utilizing drugs. Initially, Cheryl was naïve as to what was going on. Totally oblivious. However, this behavior was temporary. God began nudging Cheryl that it was time to surrender. She needed to talk, had to talk. The Bible verse, Psalms 81:10(NIV), I am the Lord your God who brought you up out of Egypt. Open wide your mouth and I will fill it, was placed on her heart. She meditated on this verse and begun to live it. She found her voice and began opening up to people. She shared her story with people one-on-one, during church services and events, and begun attending and participating in HIV related activities.

A lot has changed over the years. Cheryl’s love for the Lord and His truth continues to blossom. Duane’s drug use continued. Cheryl did not believe there was a correlation between the HIV and drug use. To the best of her knowledge, the usage began a few years after his diagnosis. She is, however, unsure as to whether or not he initially began using drugs as a coping mechanism. Duane and Cheryl eventually divorced as a result of his drug usage and infidelity. Duane died in 2014.

Cheryl remarried 10 years ago and she and her husband live in Mebane, NC. She informed him of her HIV early on in their relationship (prior to getting married). Cheryl’s marrying someone who is HIV negative means that they use condoms every time they engage in intercourse. Beyond this, HIV is not an issue for them. She was wrong in believing that no one else (besides Duane) would want her. Someone else definitely wanted to be with her. She understandably experienced negative thoughts about herself following the diagnosis. For example, that she was tainted.

Her treatment plan currently consists of a one pill cocktail, Atripla, which is taken once daily. The cost of this medication is $3200 per month. Cheryl receives her medication free of charge. She has also been on an STD medication for approximately 25 years. Due to immune system changes, an individual who is HIV positive, can receive a diagnosis. This has happened with Cheryl in the past. However, her viral loads are currently non-detectable and have been so for 15 years. Praise moment!! Her viral loads are tested annually.