This post was written by BLC Guest Blogger, Rob Quinn
Welcome Spring; a time of renewal. The season of new growth and the signs of change are all around us. This is a perfect time to pause, reassess your life, and make changes that are more appropriate and satisfactory for where you are right now. Stuff has a way of creeping into our life, and before you know it, it starts to take over.
As a long-term survivor not only living with HIV/AIDS but also thriving, I choose living a minimalist life of decluttered simplicity. For me, clutter affects my ability to focus, process information, and be productive. A happier, freer, more peaceful life promotes optimal health outcomes. Now that Spring has sprung, it’s time for Spring cleaning. Time for taking action to clear more space–physically, emotionally and spiritually.
Decluttering is a lifelong practice, one that we can repeat when needed. Decluttering, simplifying, simple living, minimalism–whatever you wish to call it–has health benefits. Clearing clutter provides me more clarity and focus. Less is more equals less physical and emotional stress. Opening up space affords me an opportunity to reach my full potential and thrive in a meaningful, productive, independent, and connected life.
There are countless online resources, self-help books and more on decluttering. Decluttering in four steps, five steps, ten steps, forty steps and more. However, living a minimalist life, I find that keeping decluttering simplified leads to successful outcomes. I ask myself a few basic questions, “What’s cluttering my life, why am I keeping it, and what parts of my life seem out of control? Is this stuff bringing me closer to my goal of optimal health and happiness or further away?” If the answer is the latter, then as Elsa says, “Let it go, let it go!”
Prior to March 9, 2016, at the end of each day I would ask myself, “Why I am up at night, tossing and turning, my mind racing?” Maybe it’s aging, wisdom, having had an implantable cardioverter defibrillator performed on March 9, 2016 due to HIV-associated cardiomyopathy, or a combination thereof, but today I have zero tolerance for any negative energy in my life. Person, place or thing. In the past, I can assure you that the source of my sleeplessness was most likely getting a restful night’s sleep, not being awake thinking of myself. Now, cue Elsa, “Let it go, let it go!”
At the end of the day, the only person I can be accountable for is me. Now each morning I ask myself, “What stuff deserves my time, my focus and my attention?” The answer, “The stuff that I am responsible for, can control, and can do something about.” And NOT the stuff that I am not responsible for, don’t control, or can do very little about.
Note to self: Remember, today is your day to let go of stuff that no longer serves you. Let it go, let it go!
National Recovery Month (Recovery Month) is a national observance that educates Americans about how addiction treatment and mental health services can enable those with a mental health and/or substance use disorder to live a healthy and rewarding life. National Recovery Month spreads the positive message that behavioral health is essential to overall health, that prevention works, that treatment is effective and that people can and do recover. I am living proof of that!
Join the Voices for Recovery: Visible, Vocal, Valuable! is the theme for Recovery Month 2015 and highlights the value of peer support in educating, mentoring, and helping others. This year’s Recovery Month theme encourages “…others in the recovery community to: be visible—emphasize the prevalence of mental and/or substance use disorders; be vocal—share personal stories and be advocates for others seeking help; and be valuable—notice warning signs and symptoms and bring awareness to the resources available.” (Substance Abuse and Mental Health Services Administration)
I have this mantra: We talk, we share, we learn. Here is my story:
Today, I celebrate 21 years of surviving, living and thriving with HIV/AIDS, openly since World AIDS Day 2010. And to think that in 1993, when I was diagnosed HIV-positive, the Centers for Disease Control and Prevention estimated that newly diagnosed individuals would have a 7 year life expectancy. In 1999, it happened: my worst fear. I was no longer living with HIV—I had been diagnosed with AIDS. In year six of the seven years I was predicted to live, I was diagnosed with Kaposi’s Sarcoma (KS), which is a strain of skin cancer common to AIDS patients. Due to failing health, I was in need of an extended medical absence from my career. Short-term disability ensued, and then turned into long-term disability. I was not prepared for the darkness that would follow; with my professional identity stripped away, I lost the sense of life purpose I so valued and fell prey to addiction, subsequently attempted suicide, and ultimately hit my rock bottom.
In 2001, just weeks after 9/11, I left New York City and returned home to Springfield, MA — “to die.” But, I never missed a dose of my HIV/AIDS medications. So, upon reflection, I believe there was always a flicker of light within willing me to live. In Springfield, I did an addiction transfer from drugs. I gained 70-plus pounds–mainly the result of excessive alcohol consumption, a sedentary lifestyle and my loss of will to live. In early 2007, during one of my appointments with my nutritionist, she mentioned that I needed to become “accountable.” I knew at that exact moment that my nutritionist not only meant accountability in terms of my nutrition, but accountability in my life! The word “accountability” resonated with me. After trudging down a long, bumpy road, I became sober in 2007 and remain sober today! That was my turning point: the beginning of my recovery (after having previously relapsed once), the discovery of my resiliency, and a reinvention of me.
I was once again confident and beginning to think about a life purpose. Merging two worlds — that of my child life career and my personal journey — I started to make a difference in the HIV/AIDS community. I knew too well from my experience as a child life specialist the value of support, specifically peer support. I had always believed that the support given in child life should be available to adults in crisis as well, and now it was. The child life skills I learned at Wheelock College are transferrable to any arena. I have reinvented myself and applied my child life skills and personal challenges and triumphs in other settings, fostering hope and resilience in myself and others. In my speaking engagements, I frequently share that as difficult as it may be to stay on track during life’s hurdles, it’s a lot harder to fall off and try to get back on. I truly believe that we can all overcome and grow from obstacles when we learn to see them differently.
Today, I am a passionate, openly gay, HIV-positive activist, blogger and educator. During my 25+ year career as a certified child life specialist and my twenty-one year journey as a long-term survivor living and thriving with HIV/AIDS, I have evolved from being an unheard voice to a voice for the unheard. Through local and statewide activism, education, outreach and social media, I am increasing HIV/AIDS awareness and reducing HIV-related stigma. I am continually seeking additional opportunities to further my work advocating for increased awareness, ending HIV-related stigma, and the ultimate goal of an AIDS free society.
As a long-term survivor on antiretroviral therapy living and thriving with HIV/AIDS, I have thought countless times through the years of switching over to a new HAART regimen. Downsizing to one involving fewer pills to take each day with fewer possible side effects and fewer doses each day. The thought of one pill, once daily with little known side effects sounded almost too good to be true. On the other hand, I’m from the early days of HIV treatment in my thinking where we had few if any options. Thoughts of “if it ain’t broke, don’t fix it,” “side effects are just a way of life,” and “what about drug resistance?” created a barrier to this possibility. Sound familiar?
It was at an AIDS Project Worcester, World AIDS Day 2013 event where Leif Mitchell, Senior Community Liaison, Boston/New England, Gilead Sciences made a presentation on the HIV Treatment Cascade. Part of his presentation included a discussion on engagement and retention in care. This included: HIV medications, possible side effects of both older and newer generation medications. I recall Leif indicating that with the newer generation medications, HIV-positive individuals experiencing medication-related issues, such as gastrointestinal, may no longer have to. This immediately caught my attention as I had been experiencing such unpleasant side effects for over ten years, often many times weekly. However as fast as it caught my attention, it lost my attention. I was just fearful of switching over. What if the newer medications don’t work? Why change if I am technically doing well (meaning I am virally suppressed) on my current regimen?
A month later at my first quarter 2014 routine appointment and blood monitoring with my infectious disease specialist Dr. Claudia Martorell, owner and director of The Research Institute in Springfield, MA , I was reviewing with her what was going on since my last visit and what I was currently experiencing, such as “my usual diarrhea.” Dr.Martorell said, “you never mentioned diarrhea.” My reaction was simply, “it is part of the journey.” Dr. Martorell echoed and reiterated what Leif had said just a month prior; “it does not have to be.” Dr. Martorell went to further evaluate if what I was experiencing was a side effect of the medications, and sure enough it was. After much discussion and thought, and more than a decade on my previous Highly Active Antiretroviral Therapy (HAART) cocktail of Kaletra and Truvada and still dealing with known side effects of lipodystrophy, lipoatrophy, gastrointestinal (diarrhea several times weekly), I made the decision to say goodbye to the old and welcome a newer generation cocktail of Tivicay and Truvada.
Why now? Dr. Martorell informed and reassured me that todays research shows that HIV-positive individuals, like myself, who are treatment adherent with their HAART, have a stable CD4 absolute count, and have a consistent undetectable viral load, can now switch over with an understanding that if for some reason their body does not respond favorably to the new HAART cocktail, he/she can resume their previous HAART cocktail. A few years back this was not an option for me, as there was a great likelihood of drug resistance. Having this new knowledge made me more confident in switching over. From past experiences, I knew the initial adjustment period for HAART HIV regimens may present many hurdles to clear. However, the time was now and I was ready! I took the next couple of months to physically, emotionally and spiritually prepare myself and my body for this newest path on my journey of living and thriving with HIV/AIDS.
Under Dr. Martorell’s close supervision, the first steps included final routine blood monitoring and now new baseline blood monitoring. For me, this switchover decision meant downsizing to two pills daily and with less known, if any, possible side effects over my current regimen. I recall early on in my journey twenty-one years ago taking upwards of forty pills daily, the first being AZT and at one time Norvir, which required refrigeration – side effects too long to list.
The decision of whether to change regimens and what to change to was complicated and a bit overwhelming. I have to admit I was a bit anxious about changing the life-saving medication regimen which worked so well for me for so long. On the other hand, I was looking forward to a “new color pill” that will undoubtedly improve the quality of my life. In partnership with Dr. Martorell, I made the decision to embark on this new path which I approached with great excitement and positivity. As an inspirational peer recently once shared, “Positive. Just like my blood…positive.”
Other than experiencing an adjustment side effect of insomnia, my body responded favorably! The baseline switch over results – one month on new HAART Tivicay/Truvada combination: CD4 Absolute at 550 (stable), CD4% at 25.0 (up from 20.7%) and viral load remained consistently undetectable. Insomnia, a common side effect of Tivicay, only lasted about a month. Important to note was that within days my gastrointestinal issues ceased. Well, it has been over a year now and I am happy to report my June, 2015 routine blood monitoring findings: CD4 Absolute is stable, CD4% at 30.4% (a 9.7% increase), and I remain virally suppressed and without gastrointestinal issues!
It is imperative to note that medication effectiveness is only as good as medication adherence. Skipping medications gives the HIV the chance to multiply, increasing one’s viral load. Poor adherence also increases the risk of drug resistance. Therefore, before changing to new medication it is important to talk with our provider about adherence, if this is an issue.
Like everything else on my life’s journey, the more I put into managing my HIV, the more I will get out of gracefully aging while being fairly healthy with HIV/AIDS. Unlike the early days of HIV, today those of us living with HIV/AIDS have so many viable options for starting or changing HIV treatment. It’s important to not only find another regimen that works for us, but one we can also live with. Lesson relearned: keep informed and up-to-date on medication advancements, new “recommended” regimens, and be sure to honestly share with my provider anything and everything as it relates to my HIV care and overall health and well-being. What was once “a way of life” or unpleasant medication side effect, such as gastrointestinal issues, no longer has to be. The choice is ours!
Thanks much Dr. Martorell and Leif. I am always moving forward and never looking back, except to see how far I have come.
On April 13 and 14, nearly 400 HIV/AIDS advocates from 30 states, Puerto Rico, and Washington, traveled to Washington, D.C. to AIDSWatch 2015, the nation’s largest annual constituent-based national HIV/AIDS advocacy event.
It was so inspiring to be among these members of our community, including my fellow members of Massachusetts Delegation, to share our journeys of living positive with over 200 Members of Congress to educate them about the important issues at stake for people living with HIV/AIDS in the United States. My twenty-one year journey as a person living and thriving with HIV/AIDS has evolved from being an unheard voice to a voice for the unheard. This year’s ask included: Protect, Fund, and Support Implementation of the Affordable Care Act (ACA); Ensure Ongoing Investment in the Ryan White Program; Modernize the Housing Opportunities for People with AIDS (HOPW) Program; Remove the Ban on the Use of Federal Funds in Support of Syringe Exchange; Support Adolescent Sexual Health Promotion Programs and Eliminate Federal Abstinence-Only-Until-Marriage Programs; Support the REPEAL HIV Discrimination Act; and, Ensure Funding of a Comprehensive Federal Response to HIV and AIDS.
This experience was a strong reminder of how grateful I am to be living and thriving with HIV/AIDS in Massachusetts. As a member of the Massachusetts AIDSWatch Delegation the past two years, I have come to relearn that Massachusetts, in my opinion, is the platinum standard for HIV care in the United States, which includes HIV prevention, testing, treatment, medical case management, and other health and social services.
My health and happiness are my greatest assets and highest priorities. The foundation on which I continue to build these is through Massachusetts’ affordable housing. Housing is healthcare; it is fundamental to our overall health and well-being and improves quality of life. Next on my priority list is access to healthcare, which includes world-class academic medical centers that offer outstanding patient care, as well as expert providers that understand the most advanced developments and break new ground with ongoing, innovative research. Continuing on is access to approved lifesaving drug treatments. This in large part made possible through the Massachusetts HIV Drug Assistance Program (HDAP), designed to help those of us who cannot afford to pay the full cost of the lifesaving HIV-related drugs we need. HDAP helps pay for my medications and Medicare Part D health insurance through the Comprehensive Health Insurance Initiative (CHII) program.
Essential to anyone’s overall health, regardless of HIV status, is oral health. I, like many others, am underinsured and do not have dental insurance. Those of living with HIV are at special risk for oral health problems. Many of these problems arise because our immune system is weakened and less able to fight off infection. Massachusetts to the rescue again! The HIV Dental Ombudsperson Program (HIV DOP) is a comprehensive dental access program for persons with HIV/AIDS in Massachusetts, funded under Ryan White Part A and with funds from the Massachusetts Department of Public Health.
Lastly, having recently relocated to Boston and as an aging HIV-er, one of my primary concerns is accessing medical case management and other health and social services for people living with HIV/AIDS. Thankfully, there is strong sense of community and belonging that Massachusetts, Boston in particular, offers.
AIDSWatch 2015 may be over, but our advocacy for increased awareness, decreased stigma, and the work towards an AIDS-free generation must continue. Let’s keep the momentum and conversations going. Advocate on behalf of yourself and our community. You can use the power of your voice and journey to make a difference right here at home, in the Greater Boston area. To find out whom your state Representative and State Senator are, type in your address at http://www.wheredoivotema.com/bal/myelectioninfo.aspx. To get the contact information for your State Senator and State Representative, go to https://malegislature.gov/People/Search.
You can also get involved locally with Project ABLE (AIDS Budget Legislative Effort) a statewide coalition of AIDS service providers, advocates and people with HIV/AIDS. Since the early 1990’s, Project ABLE has successfully increased state funding for HIV/AIDS by working effectively with several governors and their respective administrations, the Massachusetts legislature, and through mobilizing a grassroots network of HIV/AIDS service providers, advocates, and people with HIV/AIDS. Much thanks to Project ABLE’s efforts, just last week the Massachusetts Senate Ways and Means budget proposal for Fiscal Year 2016 added approximately $800,000 to the HIV/AIDS/HCV Line Item (4512-0103) over this year’s funding and over the final House budget for Fiscal Year 2016. The Senate funded the line item at $33 million. This is over a $3+ million increase over the Governor’s budget for the line item, which he funded at $29.9 million. This is the largest increase in funding for HIV/AIDS/HCV in several years, and it is great news. Please contact your state senator to thank him/her for supporting funding at $33 million for the HIV/AIDS/HCV Line Item (4512-0103) in the Senate budget.
Whether or not you are directly impacted, we are all affected by HIV/AIDS. We are advocates united: issues over egos; solutions over personal gains.
On Thursday, October 16th (our Third Thursday Forum- ask us about them!) we continued with the BLC’s “End The Stigma. End HIV.” campaign by having a discussion panel addressing stigma in the lives of people living with HIV/AIDS. Our panel included a diverse group of individuals, each with their own experience and perspective on HIV-related stigma. Of our distinguished guests we had: Dr. Stephen Brady, Catrina Cooley, and our very own Ed Jacobson. Dr. Stephen Brady is a professor and psychiatrist at Boston University’s School of Medicine; he works specifically with the Mental Health Counseling & Behavioral Medicine Program. His area of research interest is HIV/AIDS risk and mental disorders. Catrina Cooley works for the Multicultural Aids Coalition (MAC) but has been involved with HIV/AIDS work and advocacy for over 16 years. Ed Jacobson, a member here at the BLC, was recently diagnosed with HIV and gave his perspectives on being HIV positive at the age of 76. As you can see, we collected a dynamic group who, through their own experiences and perspectives, spoke about stigma in today’s epidemic.
You may be wondering, wait, who are you? Why are you writing about this stigma panel? Well I’d be happy to tell you… (If you don’t care, please skip to the next paragraph). I’m a Medical Anthropology student at Boston University’s School of Medicine. I’m interning at the BLC because I will be doing my Master’s thesis on the HIV/AIDS stigma. Specifically, I plan to address the intersecting layers of stigma and how they construct identities with the HIV/AIDS communities. I’m working under the lovely and talented Morrigan Phillips and Caitlin O’Gallagher. Together we plan to address stigma through the BLC’s “End The Stigma. End HIV” campaign. Enough about me; lets move on to more important things.
Caitlin and I facilitated the panel, which mostly consisted of Caitlin doing all the work while I provided my beautiful looks and somewhat decent handwriting. I was the Vanna White to her Pat Sajak; together we spun the wheel of stigma and discrimination. We began the panel by addressing how the audience members define stigma and how it affects their daily lives. From there we had discussions with the panelists and fielded a question and answer session where members addressed the panelists with inquiries. To end, we looked at ways in which stigma can be alleviated from future generations. From our discussion the following topics emerged:
The New Face of the Epidemic
Over the years, the face of the HIV/AIDS epidemic has changed. People, nowadays, don’t see being HIV positive as a death sentence. However, HIV isn’t immediately detectable when you look at someone; you cannot see it, which causes people a lot of anxiety. Instead of overt discrimination, many people face the pervasive, insidious stigma that is often “behind closed doors”. This often manifests as stigma in dating and relationships, access to care and treatment, and interpersonal interactions. In addition to these areas, many HIV positive individuals face intersecting stigmas from other areas of their lives, whether from being gay, using drugs, or being an ethnic minority. These identities also intersect and combine (ie. gay male who uses drugs) which creates multiple layers of stigma and discrimination. Navigating these layers can be stressful and emotionally draining.
Disclosure and Relationships Online Dating– What do you gotta do to get some action? Who do you gotta do to get some action? How can you get some action? As we all know, just because you have HIV doesn’t mean sex is off the table. Many people still want to have active sex lives and many times online dating is a way to facilitate that. What happens when you actually meet someone? Do you disclose and see what they say? Do you provide your status up front? Do you wait to meet the person and see how things go? All are valid questions and each depends on the situation and the person. However, in todays Grindr, Tinder, Craigslist, or whatever you employ to find a date, there is a need to be “DDF” (Disease and Drug Free) “UB 2” (you be too). For someone who has HIV that just isn’t an option. This stigma of “UB 2” often forces people to either 1. not disclose or 2. be further stigmatized. In combating stigma, addressing these situations and finding out ways to work around them may be beneficial.
Relationships– Who cares about dating? You’re done, you want to live your life, forget the dating world (for the time being). You want to spend time with your family and friends. However, many times people are often unaware of what having HIV means, what causes transmission, and how to act around someone with HIV. Discussion around what it means to be undetectable and the stigma that family members and friends often emit can really affect someone with HIV. It’s important to address these areas, to have discussions with your family, and educate people on what living with HIV actually means for your relationships.
Yes, HIV changes someone’s life. However, it does not need to define them. Many people expressed the need to go on living their lives, that they were not just someone with HIV. They are fathers, brothers, friends, sisters, wives, husbands, partners, PEOPLE. In order to understand stigma, these identities need to be recognized and emphasised. Agencies like the BLC allow an outlet for people. As Catrina Cooley says, “Stigma is torn apart because you can go to a place where everyone knows your name.” (Cheers!) However, taking this and adapting it into ‘real world’ setting can be challenging and frustrating.
The panel ended in looking at ways to prevent stigma for future generations. In doing so, there was an emphasis to “meet people where they are”. This can be taken in two ways. One, meet people where they are physically, go to their locations: bars, grocery stores, college campuses. This way those working in the HIV community can help get people tested, distribute condoms, and advocate. Second, meet people where they are mentally and emotionally. Facilitate models for people to help disclose, navigate relationships, help people create discussion with partners and families about what it is like to live with HIV and how they can move from there.
As you can see, the conversation was robust. Stigma is something that has been apart of the HIV/AIDs epidemic since its origins, but it doesn’t have to remain that way. As addressed at the national AIDS conference, ending stigma may be one of the quickest ways to end the epidemic.
This stigma panel is just one of many discussions that will be ongoing at the BLC regarding HIV-related stigma. Please join us on the Third Thursday of every month to talk more about stigma and many other public health, advocacy, and policy issues. Upcoming topics include HPV and HIV, HIV and Nutrition, and Understanding Your CORI Rights. We look forward to seeing you at the BLC!
It’s National Nutrition Monthand time to “Get Your Plate in Shape!”
The idea behind National Nutrition Month is to ensure that we make informed choices when we decide what and how much to eat. It allows us to develop healthy eating and physical activity habits that our bodies deserve!
The theme of 2012, “Get Your Plate in Shape!”can mean different things for different people. But its main goal is to encourage us to pay attention to exactly what is on our plate before we start eating!
One of the tips that nutrition experts from the Academy of Nutrition and Dietetics share with us is to enjoy your foods but eat less by:
Controlling portions size
Use a smaller plate, bowl and glass.
Cook more often at home where you are in control of what’s in your food.
When eating out, choose lower calorie menu options. Avoid choosing an appetizer, side, entrée and a dessert – choose only 2-3 options as part of your meal.
Brian Wansink – a famous scientist who studies how the environment affects our decisions of what and how much to eat – demonstrates how easily we can be tricked to over eat! In one of his experiments, he gave 86 nutrition experts medium-sized or small bowls with ice cream. He found that the group with the larger bowls ate 53% more ice cream than those with the smaller bowls without even realizing it and both groups reported being equally satisfied. This illustrates that it is important to be mindful when we eat and a simple way to avoid being tricked is to eat from smaller bowls and normal-sized plates.
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.