HIV has been deeply stigmatized since it emerged in the 1980s. During this decade, HIV stigma was evident in many public statements about the “gay plague” made by powerful and prominent people. Pat Buchanan (politician) said “the poor homosexuals – they have declared war upon Nature, and now Nature is exacting an awful retribution.” Jerry Falwell (religious leader) said “AIDS is the wrath of a just God against
homosexuals… AIDS is not just God’s punishment for homosexuals. It is God’s punishment for the society that tolerates homosexuals.” Just as stigmatizing, President Ronald Reagan didn’t comment on the devastating effects of the disease until 1987, after thousands of Americans had already died of HIV/AIDS.
We’ve come a long way since the 1980s, but HIV stigma persists. We now have a National HIV/AIDS Strategy that envisions the US as a place where people living with HIV will be free from stigma and discrimination.1 Much of my research explores how and why experiences of HIV stigma impact the health of people living with HIV. Here is some of what I’ve learned:
- Internalized stigma: People living with HIV may internalize stigma. This involves people “buying into” the negative beliefs and feelings about HIV, and in turn, applying this negativity to themselves. People living with HIV who internalize stigma may feel shameful, worthless, and/or less than other people. Internalized stigma is dangerous. People living with HIV who internalize stigma are more depressed, anxious, and feel more hopelessness.2 They also do a worse job managing their HIV treatment: They don’t always take their HIV medication and they tend to go longer than recommended between medical care visits.3 This may be because they feel that they don’t deserve care or want to avoid thinking about their HIV.
- Experienced discrimination: People living with HIV experience discrimination based on their HIV status. Sometimes this has a direct impact on people’s health, such as when doctors, nurses, and dentists refuse to treat people living with HIV. A lot of research also suggests that discrimination is stressful, and that this stress may worsen one’s health.4 Among people living with HIV specifically, those who experience more discrimination are more likely to have a CD4 count lower than 200,3 a sign that the immune system is seriously weakened and AIDS has developed.
- Anticipated discrimination: People living with HIV who expect discrimination in the future may also experience stress, and subsequently worse health. Imagine living your life wondering if people are going to treat you unfairly and worrying about how that might affect whether you lose your job, housing, and/or relationships. The anticipation of stigma impairs health, and increases the likelihood of developing a secondary illness such as diabetes, heart disease or hypertension.3 Additionally, people living with chronic illnesses, like HIV, who expect stigma from healthcare providers are less likely to access care when they need it.5
Given that HIV stigma is bad for people’s health, what can we do about it? HIV stigma has changed quite a bit since the 1980s; we can change it even more by the 2020s. World AIDS Day is on December 1st. To celebrate, let’s all try to change HIV stigma. Evidence shows that how we think, feel, and act depends a lot on how other people in our social networks think, feel, and act.6 We are greatly influenced by our friends, family, and coworkers – not just the Pat Buchanans and Jerry Falwells of the world. Let’s apply this science during this World AIDS Day and b HIV stigma-free in a way that loudly communicates our freedom from HIV stigma to others in our social networks. Here are some ideas:
- *Attend events: Let’s go to World AIDS Day events in our communities. When people ask about our weekends on Monday, let’s tell them all about the events and how fantastic they were. Really chat it up, I’m sure that your coworkers will be grateful for the distraction from Monday morning email buildup.
- *Show movies: Let’s invite our friends over to watch How to Survive a Plague, talk about our favorite HIV activists, and impress them with our amazing spinach dip and pumpkin-pecan pie.
- *Post on Facebook: Let’s share stories on Facebook of people living with HIV overcoming stigma from GreaterThan.Org. Let’s try to get as many videos of resilient people living with HIV on Facebook as videos of stumbling babies and tumbling cats.
- *Decorate and give cards: Let’s all download banners from The Stigma Project and use them as decorations for our office doors or cards for friends and family. People give cards for Talk like a Pirate Day, so giving cards for World AIDS Day is absolutely acceptable.
Let’s do anything HIV stigma-freeing that we want this World AIDS Day, but let’s all tell people about it. By communicating our freedom from HIV stigma, we may be able to free others from HIV stigma as well!
- National HIV/AIDS Strategy. AIDS.gov website. http://aids.gov/federal-resources/national-hiv-aids-strategy/overview. Accessed November 12, 2014.
- Lee RS, Kochman A, Sikkema KJ. Internalized stigma among people living with HIV-AIDS. AIDS Behav 2002;6:309-319.
- Earnshaw VA, Smith LR, Chaudoir SR, Amico KR, Copenhaver MM. HIV stigma mechanisms and well-being among PLWH: A test of the HIV stigma framework. AIDS Behav 2013;17:1785-95. PMCID: PMC3664141
- Pascoe EA, Smart Richman L. Perceived discrimination and health: A meta-analytic review. Psych Bull 2009;135:531-554.
- Earnshaw VA, Quinn DM. The impact of stigma in healthcare on people living with chronic illnesses. J Health Psychol 2012;17:157-68. PMCID: PMC21799078
- Christakis NA, Fowler JH. Connected: The surprising power of our social networks and how they shape our lives. New York, NY: Back Bay Books; 2009.
Dr. Valerie A. Earnshaw is an Instructor at Harvard Medical School and Associate Scientific Researcher at Boston Children’s Hospital. She earned her Ph.D. in social psychology from the University of Connecticut and completed post-doctoral training at the Center for Interdisciplinary Research on AIDS. Her research focuses on understanding how stigma impacts health outcomes among people at risk of or living with HIV and other chronic illnesses.