Around the globe, there are approximately 40 million people currently living with HIV, and an estimated 25 million have died from the disease. In the United States, approximately 1 million people are currently living with HIV. HIV stands for human immunodeficiency virus, which is a retrovirus that kills
and damages cells of the body’s immune system. AIDS stands for acquired immunodeficiency syndrome and is caused by HIV when the virus has destroyed so much of the body’s defenses that the immune-system cell-count drops to a critical level or life-threatening cancers or infections develop (Nettleman). HIV is spread primarily through unprotected sex and intravenous drug use (sharing needles), but can also be passed from mother to child through pregnancy, childbirth and breastfeeding (The Body, 2011). Some important things to keep in mind when thinking about HIV are the stigma in the community, treatment/side effects, and working with clients who are HIV+. There are challenges to all three of these aspects, as well as rewards. The following focuses on these characteristics as pertaining to the HIV/AIDS community.
The Stigmatized Population, Why?
There is still a stigma surrounding HIV, for whatever reason. Maybe it’s because the virus first came to light in the 1980s when gay men were dying from a mysterious illness. Maybe it’s because people think they can get “infected” by simply just being in the presence of someone who is HIV+ (The Body, 2011). Maybe it’s because the general population is uneducated, which leads them to be scared of the virus. For whatever reason, the stigma is un-warranted. People who are HIV+ or have progressed to the stage of AIDS have a severe stigma thrown onto them from society, and this is a challenge. On top of feeling alone and maybe confused, the negative societal stigma adds a sense of rejection from the world.
In talking with my supervisor, she informed me that much of the stigma towards the HIV+ population comes from urban legends about it. A friend of mine even told me of a story he heard, which was completely over the top and there was absolutely no way that it could have happened; it was just used to make people who are HIV+ or have AIDS look like terrible people. Folktales about the spread of HIV include things such as “AIDS Mary” and AIDS by “stealth injection.” AIDS Mary is sort of like a cautionary tale on the dangers of unprotected, careless sex. The story goes as follows: “After a night of casual sex with a woman he doesn’t know… a man wakes up the next morning to find the words ‘Welcome to the world of AIDS’ scrawled in lipstick across his bathroom mirror” (Emery). Supposedly this woman was purposefully sleeping around to spread the disease to anyone she could seduce after she had contracted it from a former lover. Clearly, this story is a reflection “of the fear and ignorance that surrounded the epidemic in the mid-1980s” (Emery). AIDS by “stealth injection,” much like the story told to me by a friend, is just like it sounds. Claims in these legends have stated that women have gone out clubbing, or sat down at the movie theater, and been pricked by a needle. Attached to the needle is a note that states, “Welcome to the world of AIDS.” These legends are not only untrue, but they are hurtful to the population. There are facts to go against these urban legends, yet people are hanging onto them, creating a stigma that people who are HIV+ will infect everyone in their path (Emery). This is simply ridiculous and ignorant. Because of the stigma placed on this population, it is hard for them to live a normal life. This stigma gives a sense of rejection from the rest of the world, and it has also been considered an obstacle in organizing programs in response to the epidemic.
A Sociologist named Erving Goffman defined stigma as “an attribute that is deeply discrediting,” and that it brings down a normal person to a “tainted, discounted one,” and that society will stigmatize others based on deviance from what is normal. This leads for the stigmatized individuals to view themselves as unwanted and shunned (as cited by Coates et al). The formation of stigma is not only based in one’s mind, but also in society. Stigmatized groups are disadvantaged in many ways, including income, education, housing status, medical treatment and health. Stigma is most easily described in stages put together by Bruce Link and Jo Phelan, stating:
1) Individuals distinguish and label human differences, 2) dominant cultural beliefs link labeled persons to undesirable characteristics (or negative stereotypes), 3) labeled persons are placed in distinct categories to accomplish some degree of separation of “us” from “them,” and 4) labeled persons experience status loss and discrimination that lead to unequal outcomes (as cited by Coates et al).
Here, the reasons for stigma are explained, yet is anyone doing anything about it? There are a number of programs in the country which support people who are HIV+, allowing them safe havens and small communities. The Boston Living Center is one of them. Interestingly enough, stigma is what is holding back the organization of programs just like the BLC, but we need programs like the BLC to reduce the stigma.
Medication and Treatment
Continuing medication through terrible side-effects is hard all alone, but the support of a group in the same position makes it easier. Group counseling is so important both psychologically and medically, because it helps with mental and physical health. Along with upkeep of medication to take, it is important to also be a part of a group therapy or one-on-one therapy. Becoming a Helper by Corey and Corey touches briefly upon the benefits of group therapy. “Groups provide a sense of community, which can be the antidote to the impersonal culture in which many individuals live” (Corey and Corey 334). This is true especially for HIV+ groups, as discussed before in regards to stigma. It’s much easier for people who have HIV to relate to others who are also going through the same things, hence the importance of groups. There is also a sense of safety and understanding due to the fact that everyone is going through the same thing. “Groups offer a forum in which members reveal their confusion, anger, helplessness, guilt, resentment, depression and anxiety… members are able to see the similarity of human struggles” (Corey & Corey 334). Working in a group setting of clients who are all HIV+ can bring up many of the similar issues that these people feel, especially that they are looked at differently by the general population. It’s important for them to talk about these feelings and have others who can relate to them, as well as to help them cope in their everyday life.
Studies have been done involving HIV+ adolescents and peer-group therapy. “Adolescents who have experienced a long history of HIV infection accumulate a number of potential difficulties with peers, with self-image, sexuality, future academic and occupational plans, and planning for life as an adult…” (Blanche et al). Because of these potential issues with adolescents who are HIV+, a study was done about the effects of peer-group therapy. The conclusion came down to say that “peer support group had a beneficial effect on the adolescents’ acceptance and perceptions of their HIV infection… improvement in well-being could have a positive influence on biological variables” (Blanche et al). The interesting part about this is that peer-group therapy may have an effect on the biological factors of HIV, like how medical treatment affects the body. While the clients are going through therapy, their overall well-being is being brought up to a higher level, which in turn affects their biology. Holistically, this makes a lot of sense and is very important to chronic illnesses. It is clear that peer-support groups are helpful for people living with HIV, because it offers them an outlet and some understanding into their lives that usually don’t have those things.
In working with clients who are HIV+, it is important as a therapist to consider things such as confidentiality, ethics and cultural competency. All of these aspects of a helper can relate to working with clients who are HIV+, and they are important to counseling this population. It is hard to find a therapist who is educated in the culture of HIV/AIDS, and who understands what the client is going through. All of these aspects of therapy should be kept in mind with any population, but it is especially important in working with clients who are HIV+. There are some regular themes that have come up in HIV/AIDS counseling which include secrecy, complexity and relationships/interaction. Secrecy relates to the question of who the client should disclose his or her status to, and how the therapist can guide the client on that. Complexity means that both socially and biomedically, many people are involved with the client, which can lead to more problems or conflicts. Relationships/interaction refers to the fact that HIV/AIDS can create a relationship problem due to the social stigma of the illness and fear of contracting the illness. (Bor & Miller). As a therapist, there are many basics to consider in counseling a client with HIV/AIDS. These basics are generally the basics of counseling which can be applied to working with any population, but some of these concepts are especially important in counseling people who are HIV+. Confidentiality and ethics are closely related. Clients are expected to trust their therapists, but ethically, there are things that therapists need to expose to authorities. In Becoming a Helper, Corey & Corey use an example of working with a client who is HIV+. “As a helper, you may need to balance your client’s right to confidentiality against warning a third party ho may be at risk…” (Corey & Corey 239). There is a balance between confidentiality and ethics in regards to working with clients who are HIV+. “… Practitioners who work with HIV-positive clients will continue to wrestle with the ethical issues in deciding on a course of action with their clients” (Corey & Corey 239). It’s a hard balance, but apparently confidentiality with the client holds more than ethics do. The client must trust the therapist, so in this type of case, the therapist must keep confidentiality. Other therapists that Corey & Corey work with claim that “there are many alternative to breaking confidentiality and warning a third party” (Corey & Corey 240). Imaginably, this would mean the client telling the third party themselves.
Cultural competency is another concept that is important for those in the helping profession to understand. In regards to HIV, this is extremely important because it involves knowing different cultural beliefs. In HIV prevention and education, it’s difficult to get through to people who culturally do not talk about sex and the body in the same way that Americans do. “These beliefs and attitudes make our job very hard… you can’t talk about HIV without talking about sex, certain body parts, certain activities and certain truths that many people would prefer [not to hear]” (Lechky). In this Canadian article, it states that people “reason [that] they’re not white, not gay, and don’t use drugs, and therefore are not at risk. There’s still a lot of stigmatization and stereotyping around who gets infected” (Lechky). Therefore, it’s important to look at all cultures and the different ways in which they can be educated, regardless of their beliefs. There is a huge emphasis on clients seeing the therapist as a real human being, and building a trusting relationship between the two. It is important for the therapist to be “very open-minded, nonjudgmental, and willing to educate themselves on the issues” (Lechky). There is clearly a huge importance in knowing and really understanding what the client is going through, and if the therapist is not actually going through the same, education about the issues is of great importance in understanding and empathizing.
Self-Reflection & My Future as a Helper
I absolutely love being at the Boston Living Center. It has been an integral part in my experience at Lesley, and I wouldn’t change it for anything. I was so skeptical about going in there and working with clients; I simply didn’t have any idea what to expect from the HIV/AIDS population. I am now fully open-minded and loving towards everyone, no matter their situation. Working with this population has opened my heart to so many different opportunities in the helping profession. Honestly, I can’t see myself leaving the BLC. This is such a spectacular community center for people living with this illness, and I know that it has helped so many. One of the members, told me that he was in a really terrible place (mentally, physically, and environmentally) before he came to the BLC. Now, he’s doing so much better and he wants it to stay that way. He revealed to me that being at the Boston Living Center really made him want to live with AIDS, not die from it. The Center has been a turnaround place for so many people, and I am so happy to be a part of it. The members have been recognizing me, and it just warms my heart to know that I can make a difference to them. Simply smiling at them brightens their days, and some will open up to me and tell me stories. I love that I have already made such an impact just by being my positive, smiley self. I know that I am supposed to terminate at the BLC, and I will as an intern, but there is no way I can stay away from this place as a volunteer. I have been sucked in and there is no way for me to get out. I am making time next semester to make a point to go to the Center at least once a week, that’s how much of an impact it has had on me. I am so incredibly grateful for being given this opportunity to make a difference.
As for future internships, I am sticking with the helping professions. A recent interest of mine has become veterans, specifically those with PTSD. I would like to find an internship at an organization for veterans, and I would like the organization to have a population of women. Maybe there is a place for women veterans that I can do something at. This new interested was discovered when I was in my Women, Culture and Society class with Amy Rutsein-Riley, and we had a guest speaker who spewed off all of these statistics about the lack of help that veterans receive when they come back from serving. I was especially interested by the fact that approximately 70% of women report sexual assault during their service. These numbers were appalling to me, and I can imagine that these women aren’t necessarily getting the help that they do need to recover from these traumatizing experiences. The same goes for veterans in general, because I don’t necessarily think that they are getting the correct counseling necessary for their PTSD. I would especially like to work with wounded soldiers in getting back on their feet and back into the social world of the United States. Many end up homeless and hungry because there are no programs that show them how to live again. This is research that I will be conducting over winter break.
As a whole, the Boston Living Center has been a place of sanity for me over the past semester. I couldn’t imagine not loving waking up and going to my internship two days a week as some people do. I absolutely love the people and the environment, and I especially love that everyone who works there is there to help. If I would have to say one thing I want to do in the future, just one, it would have to be helping people. It’s my self-care, it’s my happiness and soon, it will be my career.