A Practical Guide to Coping With HIV-Related Stigma

Education and Self-Assessment Are the First Steps

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Despite advances in the prevention and treatment of HIV, the shadow of HIV stigma still looms large, affecting many of those of living with the disease. So profound is the fear of stigmatization that it often seems to fly in the face of public awareness. To some, it is far easier to avoid HIV testing, for example, than to risk exposing oneself to discrimination or disapproval.

Attempting to minimize these fears, or even rationalize them, fails to take into account the complex dynamics that both trigger and perpetuate stigma.

The Roots of HIV Stigma

While the quality of life has improved enormously for people with HIV in the past 30 years, many of the same social and psychological barriers remain.

Ultimately, HIV is not like any other disease, at least not in the way that the public perceives it. What separates it from others illnesses like cancer or heart disease is that, as a communicable disease, those infected are often seen as vectors for transmission. Blame is frequently assigned, and not just  to the infected individual but to an entire population, whether they be gay men, injecting drug users, or people of color.

Even before the AIDS epidemic began in the early 80s, many of these groups were already stigmatized, labelled by some as being either promiscuous or irresponsible. By the time the first wave of infections hit, the rapid spread of the disease through these communities only helped reinforce negative stereotypes.

As a result, the people most at risk of HIV were often sent into hiding, either for fear of abandonment, discrimination, or abuse.

Discomfort with sexuality also plays a major role in the stigmatization of HIV. Even in otherwise progressive cultures, sexuality can often incite intense feelings of embarrassment or shame, particularly when related to homosexuality, sexually active women, or sex among youth.

At the same time, so-called "secondary disclosures" (the "How did you get it?") further prevent many from stepping forward when faced with such fears as having to admit an affair, reveal a drug problem, or come out about one's sexuality. HIV criminal laws in many states only serve to reinforce these fears, casting persons with HIV as "blameworthy" while suggesting that those without are "victims."

All of these issues can't help but contribute to feelings of stigmatization, both real and perceived, and may explain why 20% of the 1.2 million Americans living with HIV remain wholly untested.

Overcoming HIV Stigma

Learning to overcome HIV stigma is not always an easy thing. It requires a degree of self-reflection, as well as an honest assessment of your own personal biases and beliefs. One of the aims is to understand which of your fears are perceived (based on attitude or perception) and which are enacted (based on actual experience).

By separating the two, you'll be better equipped to lay out a strategy to not only overcome your fears but to better protect yourself against possible, real acts of discrimination or abuse.

In the end, overcoming stigma is not so much a decision as a process, one that takes time and patience. More importantly, though, it's about not being alone. Sharing your fears with others can often put things into better perspective, providing you a sounding board rather than isolating yourself in your deepest, darkest thoughts.

Here are a few tips on how to begin:

  • Firstly, try to remove blame from any discussion you may have with yourself. Remind yourself that HIV is a disease and not a moral consequence.
  • Next, educate yourself about HIV using quality reference materials. Community-based organizations are great sources for this, offering brochures and pamphlets that are not only accurate and plainly written, but often culturally relevant
  • If you are afraid of opening up to someone you know, start by calling an AIDS hotline. Hotlines can usually refer you to support groups or counselors with whom you can speak freely and confidentially.
  • Understand your rights under the law. Community-based organizations can often put you in touch with legal services to assist you when faced with discrimination at work, in housing, or with healthcare providers.
  • If you decide to get an HIV test, discuss any confidentiality concerns you may have with your doctor or clinic. Leaving any concern unspoken will only add to your anxiety.
  • Many hospitals and clinics today offer care services to those living with HIV, including support groups, family services, drug treatment programs, and mental health counseling.
  • When you are ready to speak with friends or family, take time to prepare yourself.  Consider all possible reactions and the ways you might deal with them. Try to work out in advance how you would answer questions like, "How did you get it?" or "Did you use a condom?"
  • More importantly perhaps, accept that people will sometimes ask insensitive and even stupid questions. Try not to be too defensive. Remind yourself that it's more a reflection of their own fears and that they're going through a process, too. If you can, use it as an opportunity to educate and enlighten. You may be surprised how little people know about the disease. Give them the benefit of the doubt.
  • And finally, if you are experiencing prolonged depression or anxiety, or have a substance abuse problem, seek professional help. Ask your doctor for referrals or speak to your healthcare provider. Don't go it alone if you don't have to. There is help.

Sources:

Pulerwitz,J.; Michaelis, A.; Weiss, E.; et al. "Reducing HIV-Related Stigma: Lessons Learned from Horizons Research and Programs." Public Health Reports. Mar-Apri2010, 25(2):272-281.

Maharan, A.; Sayles, J.; Patel, V.; et al. "Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations of the way forward." AIDS. August 2008; 22(Suppl 2):S67-S79.

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