Tag Archives: HIV AIDS

It’s not about ‘clean’: Dismantling the language of HIV stigma

By J. Richelle Joe and Sarah B. Parkin June 5, 2018

Words matter. The language we use when discussing sensitive, controversial or stigmatized topics reflects and shapes our attitudes and beliefs about those topics. Such is the case with HIV and AIDS. Since being widely identified in the 1980s, HIV and AIDS have been perceived negatively by the general public, resulting in the pervasive use of language that characterizes those living with the virus or the disease as undesirable and even dangerous.

The counseling context is not immune to such damaging language, and it is reasonable to infer that words have a powerful influence on mental health and counseling outcomes for people living with HIV. Counselors must beware of the power of language; outdated information about HIV and AIDS can intersect with the inadvertent use of stigmatizing language and undermine the ethical principles of nonmaleficence and beneficence that form the foundation of our profession. We also have a responsibility to actively oppose HIV- and AIDS-related bias and stigma by educating ourselves about HIV and AIDS and changing the language we use when discussing them.

Let’s start by offering a quick guide to HIV and AIDS terminology:

HIV: Human immunodeficiency virus; people can be diagnosed with HIV and not have an AIDS diagnosis
AIDS: Acquired immunodeficiency syndrome; caused by HIV
CD4 cells: Cells that are a part of the body’s immune system; also known as T cells
Viral load: The amount of HIV particles in the body
Opportunistic infections: Illnesses, including certain types of cancer, that occur more often when someone has a weakened immune system
ART: Antiretroviral therapy, a common treatment for HIV
PrEP: Pre-exposure prophylaxis, daily medication that can reduce one’s risk of contracting HIV
PEP: Post-exposure prophylaxis; prescribed use of ART within 72 hours of a possible exposure to HIV
Viral suppression: When the amount of HIV particles in an individual’s system decreases to the point that the virus is not detectable by current tests; occurs when an individual is adherent to treatment; also known as having an undetectable viral load

The changing face of HIV and AIDS

In the United States, AIDS was originally called GRID (gay-related immune deficiency), and the illness was most commonly associated with gay white males. Although the name of the illness changed as it became apparent that minority sexual orientation was not a determinant of HIV transmission, AIDS continued to be viewed as a “gay disease,” with multiple layers of associated stigma.

Although the stigma remains, the demographics of individuals living with HIV have shifted and increasingly include women and individuals of color. According to the Centers for Disease Control and Prevention (CDC), women account for approximately 20 percent of new HIV diagnoses, and among African American women, the estimated lifetime risk of an HIV diagnosis is 1 in 54 (compared with 1 in 941 for white women). African American and Latinx communities are disproportionately affected by HIV and AIDS. This is largely as a result of social determinants of health such as access to accurate information, preventive methods and health care, which are influenced by geographic location, cultural and social beliefs, socioeconomics, and stigma about sex and sexuality.

As the demographics related to HIV and AIDS have changed since the 1980s, so has the scientific knowledge, leading to key advancements in HIV prevention, diagnosis and treatment. Today, people with HIV can live long, healthy lives, provided that they adhere to treatment and monitor other aspects of their health.

Unfortunately, much of what is commonly known about HIV and AIDS is outdated and inaccurate. For instance, recent surveys conducted by the Kaiser Family Foundation indicated that some Americans still believe that HIV can be transmitted via mosquito bites, shared eating utensils and toilet seats. Many Americans also instinctively associate HIV with death, despite critical advancements in HIV care.

HIV is not a death sentence. For individuals living with HIV, the key to their health is the strength of their immune systems as measured by their CD4 cell count and viral load. Ideally, the goal for people living with HIV is to have a high CD4 cell count and a low viral load. Fortunately, as a result of significant medical advances over the past few decades, individuals with HIV who are consistent in their adherence to ART can have a viral load that is undetectable. Studies have shown, and the CDC has affirmed, that individual with undetectable viral loads have almost zero chance of transmitting HIV to another person even if other protective measures are not present. Never before in the history of HIV and AIDS has there been such hope for HIV prevention generally and people living with HIV specifically.

Unfortunately, not all individuals living with HIV access care and have an undetectable viral load. According to the CDC, approximately 1.1 million Americans are currently living with HIV, with 85 percent of these individuals aware of their HIV status. However, only 62 percent of Americans living with HIV are engaged in care, and only 49 percent of individuals living with HIV have an undetectable viral load. Multiple factors, including public health policies and social determinants of health, contribute to these statistics.

Unaddressed mental health needs might also be at work. People living with HIV may experience adjustment difficulties, depression, anxiety and trauma — all of which can affect an individual’s willingness and ability to seek medical care and remain adherent to treatment. In the past, HIV care focused primarily on the medical needs of people living with HIV. Today, there is growing awareness of the need to address the psychological and emotional aspects of HIV and AIDS because those factors may affect overall wellness.

The power of language

Despite the hope that science has given us with respect to HIV prevention and treatment and the increased awareness of the need for mental health support for people living with HIV, the language frequently used to describe HIV and AIDS continues to bolster the stigma associated with the illness.

Whereas phrases such as “clean bill of health” are benign with respect to other illnesses, when used in connection with HIV and AIDS, they can have a much different connotation. For instance, use of the word “clean” to describe someone who does not have an HIV diagnosis can send the message that those who are HIV positive are somehow unclean and dirty, or even impure and sinful. But HIV is not about clean. Not having an HIV diagnosis is not a determinant of cleanliness or good moral character. Equally, having an HIV diagnosis has nothing to do with being dirty or having loose morals.

Similarly, referring to HIV “infections” rather than HIV diagnoses or transmissions conjures thoughts of contamination, impurity and even death. Simply put, the dichotomy of “clean” versus “infected” breeds stigma, negativity and hopelessness. These negative connotations make getting tested, disclosing one’s HIV status, discussing methods of protection, and accessing and staying in care more difficult.

When counselors inadvertently use stigmatizing language in reference to HIV and AIDS, they risk harming clients by perpetuating stigma and reinforcing barriers to both physical and mental health care. By reducing stigma through intentional language choices, counselors can better help individuals explore their options for entering care or identify potential barriers that may prevent them from staying in care in the future. Additionally, helping clients identify protective factors such as support systems, positive coping strategies and individual strengths can be beneficial to their growth and development.

Regardless of HIV status, and in the name of balance, it is also important for counselors to inquire about aspects of their clients’ sexual wellness when the topic arises. As previously mentioned, with clients who are living with HIV, counselors can discuss getting and staying in care. With clients who are not living with HIV, counselors can use psychoeducation to identify appropriate prevention methods, including PrEP, PEP and proper condom use.

Say this, not that

Recognizing the negative impact that stigmatizing language has on individuals is only the first step toward defusing the taboo of HIV and AIDS. The next step is to identify specific stigmatizing phrases and replace them with appropriate alternatives.

On a foundational level, counselors can make an easy change in their communication about HIV and AIDS simply by using person-first language. Saying “person living with HIV” rather than “AIDS patient” does several things. First, it builds the therapeutic relationship and helps to externalize the diagnosis rather than fusing it with the client’s identity. Second, person-first language decreases stigma by emphasizing the possibility of living, and living well, with HIV.

The use of “person living with HIV” rather than “AIDS patient” also reflects a more accurate understanding of the illness and its progression. Often, HIV and AIDS are used interchangeably, despite an important medical distinction between the two. For counselors, it is essential to accurately differentiate between an HIV diagnosis and an AIDS diagnosis.

An HIV diagnosis follows a reactive test for the HIV virus; however, a diagnosis of AIDS is given by a physician only if an individual’s CD4 cell count is below 200 or if the individual develops certain opportunistic infections. Given that effective treatment is available for individuals who have been diagnosed with HIV, it is likely that someone who is adherent to treatment will never receive an AIDS diagnosis. By ignoring the difference between these two diagnoses, a counselor might appear to be invalidating, deterministic and incompetent to a client who is living with HIV.

Additionally, the phrase “full-blown AIDS” needs to be retired from our collective vocabulary. This phrase — which bolsters fear, reinforces HIV stigma and conjures thoughts of death — is wholly inaccurate and is no longer used among medical professionals. Along the same lines, stating that someone “died from AIDS” is also unproductive and inaccurate. If HIV progresses to the point that an AIDS diagnosis is given, an individual is vulnerable to opportunistic infections, which could be fatal. Hence, an individual might die from an opportunistic infection or an AIDS-related illness but not from AIDS itself.

Accuracy in our language when discussing this particular illness is critical. Errors in our word choices can communicate misinformation and harm clients, adding to the barriers that often prevent clients with HIV from seeking medical and mental health care services.

Conclusion

Understandably, discussing HIV and AIDS can be awkward or uncomfortable for some individuals, including counselors. However, equipped with the right language, counselors can engage their clients in vital conversations about their sexual and mental health. By discussing HIV transmission rather than infection, we can destigmatize the illness and the conversation. We can disrupt the pervasive narrative that equates HIV and AIDS with death, uncleanliness and immorality. And most important, we can be bridges rather than barriers so that people living with HIV will feel encouraged and empowered to access care and live well.

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J. Richelle Joe is an assistant professor of counselor education at the University of Central Florida. Her work focuses on HIV prevention and culturally and ethically sound services for people affected by HIV or AIDS. Contact her at jacqueline.joe@ucf.edu.

Sarah B. Parkin is a master’s student in clinical mental health counseling at the University of Central Florida. Her research interests focus on intersectionality and marginalized communities.

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Vocational counseling in HIV/AIDS communities

By Michael B. Drew July 6, 2017

Following a career-ending injury as a firefighter captain, I embarked on a new adventure as a doctoral student, attending the University of Georgia’s counselor education and student personnel services program. In a leap of faith, my wife and our three small children moved from Rochester, New York, to Suwanee, Georgia, where we quite literally knew no one. I remember thinking at the time that trying to make a career change like this made running into a burning building look easy. Fortunately, I was assigned to a rural HIV/AIDS clinic. The people I was about to meet there would welcome me and ultimately change my life.

As I stepped nervously through the clinic door and my eyes adjusted to the small, dimly lit room, I was greeted by a friendly man seated behind a makeshift desk. During the months that followed, I came to know him — and the important role that work played in his life while living with HIV/AIDS — well. For him, I think that returning to work by answering phones and greeting new visitors to the clinic represented a way to contribute to his community. His bright smile and warm sense of humor made him perfect for the job.

As we shook hands, he jokingly pointed to a piece of tape that stretched across the back of an office chair. On the piece of tape, his name was proudly displayed in handwritten marker. “This is my chair. … They let me work here!” he exclaimed.

Reflecting on that first day, I’ve come to realize that this was more than just an office chair — it symbolized his success in reclaiming a professional identity. What I learned from this inspiring man has since helped me reclaim my own sense of professional identity as I shifted from being a firefighter to a mental health counselor. This article is dedicated to his memory.

Professional identity

Each of us possesses many intersecting identities. Some of these identities are obvious, and others not so much. For example, if I didn’t share with someone my disabled status, it is unlikely that they would be able to tell because my injuries are internal, and I go about my day doing everything possible to keep it this way. But when I do share my story, people usually thank me for my service because for many, firefighters are like heroes.

I think everyone should enjoy this type of validation because we are all living courageously with different challenges. Some of these challenges include health problems or sudden loss of employment. In managing the complexities of HIV/AIDS, both of these factors are compounded, and the very real threat of social stigma can discourage a return to work, compromising personal and professional identity.

In all honesty, I can tell you that I’m still affected by a passing fire engine because firefighting is such a deeply internalized identity for me. Similarly, during initial intake and screening, vocational counselors may explore the meaning of work in the lives of their clients with HIV/AIDS, paying special attention to differences before and after infection, and any existential questioning in the wake of serious illness.

For some of these clients, HIV/AIDS was the impetus for them leaving work in the first place, resulting in changes to personal and professional identity. This means that counselors should help these clients explore feelings of loss in social and financial capital associated with their former work environments, as well as strategies for establishing new supports. Other important concerns include management of strict medication routines, side effects resulting from medications, fatigue, exposure to work-related stressors and the risk of contracting outside infections occurring in the workplace. By carefully exploring a range of vocational challenges with these clients, and the role of work in their lives, counselors can facilitate the process of forming new professional identities.

Situating vocational needs

Re-entering the workforce is increasingly possible for clients with HIV/AIDS, thanks in large part to continued advances in highly active antiretroviral therapy. These medications are used in combination to reduce the progression of HIV by preventing the virus from making copies of itself.

Thanks in part to such promising medical advances, vocational counselors can begin work with these clients by exploring myriad career opportunities and matching them with each client’s unique skills, interests and health needs. I should note that although returning to work may reflect a significant victory for people living with HIV/AIDS, counselors still need to understand the potential challenges facing these clients related to workplace discrimination, insurance denial and managing health care while working and caring for loved ones. Overlooking these realities risks setting up your clients for possible failure and, even worse, interruptions in health-sustaining insurance coverage.

A vocational model for the HIV/AIDS community (graphic designed by Michael B. Drew)

Meeting basic needs

President Obama’s National HIV/AIDS Strategy (2010) explicitly called for increasing career development for people living with HIV/AIDS and using innovative employment strategies to expand potential career options. However, most AIDS service organizations and their clients depend on federal funding provided under the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, including for life-sustaining medications. This leaves many clients feeling threatened under the current Trump administration and the possibility of budget cuts.

A possible consequence of this fear of lost benefits is that many people living with HIV/AIDS may feel pressure to find work that provides private health coverage. At present, federal funding is allocated for housing, medication and legal assistance, leaving very few clinics with the resources or vocational expertise to address the challenges associated with returning to work. For outside agencies that do offer career or vocational counseling services, most are not familiar or equipped to serve the unique needs of the HIV/AIDS community. This leaves many clients afraid to access these services when having to negotiate work accommodations, maintaining a strict medication schedule and coping with episodic symptoms that require frequent and unexpected leaves of absence.

For these reasons, vocational counseling in the HIV/AIDS setting is inherently complicated. This reflects the need to include such specialized services in the familiar and trusted space of AIDS service organizations, where professional networks and community partnerships are already in place.

The role of legal services

In addition to these formidable challenges, HIV criminalization laws currently exist in roughly half of the 50 U.S. states, leaving clients at risk for further marginalization in the workplace following intimate partner complaints and subsequent arrests and convictions. In some cases, these arrests have even resulted in prison sentences and mandated sex offender status, making a return to work exceedingly difficult.

This unfortunate reality is even more problematic for women, who are often diagnosed with HIV/AIDS before a male partner due in large part to having regular gynecological exams. This means that women are at additional risk for legal prosecution for “knowingly infecting their partners” despite the possibility that the virus originated from an accuser. This perpetuates a veil of secrecy, adding to the complexity of HIV/AIDS treatment options, particularly among infected mothers who may face persecution for passing the virus on to their children. Not surprisingly, such discriminatory practices become disincentives for HIV screening and follow-up care. Furthermore, surveillance reports from the Centers for Disease Control and Prevention (2014) reflect that African American women represent a disproportionate number of newly infected cases.

Given that more women than men are responsible for the care of children and elderly family members, vocational counselors should explore flexible work opportunities that align with individual needs. This should include legal counsel from the local community that is available for clients who wish to make informed decisions about returning to work.

Exploring career interests and abilities

In the wake of my firefighting injury, and facing a lifelong disability, I can attest to the significance of vocational counseling as an integral part of the healing process. This is a familiar narrative among people living with HIV/AIDS, who sometimes struggle to explain why they have not returned to work given their outward appearance of health. Counselors can help these clients respond to any concerns involving gaps in employment history, the need to update work skills, résumé writing, professional attire and preparation for job interviews.

This need for personalized vocational counseling remains largely unmet, however. The counseling profession can respond to this increasing demand for career-related services by attending HIV/AIDS conferences and workshops to learn more about living and working with the virus. Community-based partnerships are also invaluable. Many AIDS service organizations provide internship opportunities in which counseling students can gain field experience and insights into the process of cultivating new personal and professional identities.

Flexible career opportunities

Many individuals must manage episodic symptoms associated with HIV/AIDS. In response, vocational counselors can expand these clients’ career opportunities by helping them connect with employers that offer flexible scheduling or the possibility of working from home.

In dealing with HIV/AIDS, episodic symptoms may remain dormant for years, only to reappear and become disruptive to work scheduling and the person’s ability to perform routine tasks. Many clients are fearful that under such circumstances, employers will expect them to share personal information when they are absent from work. Managing personal privacy surrounding any chronic illness is challenging, and in the case of HIV/AIDS, an added threat of stigma remains.

It is important for counselors to share information with their clients concerning extended Medicare and Trial Work Period programs, which are designed with flexibility for people who have disabilities. This may help to alleviate concerns about losing Social Security disability benefits, which is a common theme among people living with HIV/AIDS when contemplating a return to work.

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Michael B. Drew is a retired firefighter captain from upstate New York. Following a career-ending injury, he completed a bachelor’s degree in advanced fire administration and a master’s degree in mental health counseling and is currently a doctoral candidate in counselor education and student personnel services at the University of Georgia. Contact him at mbd01283@uga.edu.

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.