Being diagnosed with HIV (human immunodeficiency virus) is a life-changing experience. In addition to starting treatment—and committing to the lifelong process of keeping the virus suppressed with medication—having HIV can impact emotions, mental health, stress level, career, and relationships. Having HIV can change the way that people act toward you and the way that you feel about yourself. The term for this is stigma.
Here, we take a closer look at what stigma is, how stigma can affect a person living with HIV, and strategies for coping with stigma.
What is stigma?
Stigma is described as “negative or unfair beliefs directed at a person or a group of people.” It is closely associated with prejudice, where a person is judged based on preconceived ideas. Stigma is also closely associated with discrimination. Fear, misinformation, and outdated ideas about HIV all contribute to stigma.
If you have ever felt judged, blamed, or treated like an “other” because you have HIV, this is stigma. However, stigma is not limited to these specific feelings and experiences, and stigma can change depending on the situation and take many different forms. For example, the stigma a person experiences among coworkers may feel different from the stigma they experience among family members.
There is also internalized stigma, or self-stigma. This occurs when a person with HIV views the stigma about people with HIV as valid. They may experience shame, embarrassment, guilt, self-directed anger, or any number of other negative thoughts or opinions about themselves because they are living with HIV.
How stigma can affect people with HIV
Stigma has consequences. For people with HIV, experiencing stigma can negatively affect mental health. Stigma or the anticipation of stigma from healthcare workers can cause a person to avoid being tested for HIV or avoid seeking treatment for HIV. Stigma is also associated with lower adherence to antiretroviral therapy (ART)—this puts people who are treating HIV at a higher risk for HIV complications and transmitting the virus to others.
It is also worth mentioning that HIV can exist alongside other conditions that carry their own stigma, including mental health disorders and substance use disorders. Stigma can have similar consequences for these conditions, making a person less likely to seek treatment.
Strategies for coping with stigma
Because stigma about HIV persists, any person who is living with HIV should take steps to address stigma:
- Spend some time thinking about your experiences with stigma. Have there been situations where you have felt uncomfortable, treated differently, embarrassed about having HIV? Spend some time thinking about your opinions and feelings about HIV and people who have HIV. Consider writing about your experiences.
- Find someone to talk to. Having the support of a friend or loved one can make a major difference in how you feel about HIV and how you feel about yourself. Consider participating in a support group where you can meet other people living with HIV—they will know better than anyone what the experience is like.
- Keep learning about HIV. Stigma is based in misinformation, and knowledge helps reduce stigma. Keep learning about HIV, how it’s treated, how you can keep yourself healthy, and what the experience of living with HIV is like for other people. Knowledge can help prepare you to talk about HIV and help reduce feelings of self-stigma.
Stigma and mental health are also important topics to discuss with your healthcare provider. Because your healthcare provider will be experienced in treating HIV, they may have suggestions on coping with and addressing stigma.
Stigma in healthcare settings
Sometimes, people experience stigma from healthcare workers. Negative experiences in the past can cause a person to anticipate negative experiences in the future.
It’s important to work with healthcare providers who you feel comfortable working with. Being honest with your healthcare provider is important to successfully managing HIV and staying healthy while living with HIV.
If you are facing stigma in a healthcare setting, consider looking for a different healthcare provider.
Sources: UpToDate. Patient education: Initial tre... + 14
- UpToDate. Patient education: Initial treatment of HIV (Beyond the Basics).
- National Institute of Mental Health. HIV and AIDS and Mental Health.
- Centers for Disease Control and Prevention. HIV Stigma and Discrimination.
- HIV.gov. Standing up to Stigma.
- Roger Pebody. What is HIV stigma? NAM aidsmap. February 2021.
- Kaleigh Flanagan. Staff Perspective: How Do We Define Stigma and How Long Should We Let Stigma Define Mental Health? Uniformed Services University. January 8, 2018.
- Roger Pebody. Your own feelings about having HIV. NAM aidsmap. December 2019.
- Centers for Disease Control and Prevention. Stigma and Mental Health.
- Bulent Turan, Whitney S. Rice, et al. Longitudinal association between internalized HIV stigma and antiretroviral therapy adherence for women living with HIV. AIDS, 2019. Vol. 33, No. 3.
- Seth C. Kalichman, Harold Katner, et al. HIV-Related Stigma and Non-Adherence to Antiretroviral Medications among People Living with HIV in a Rural Setting. Social Science & Medicine, 2020. Vol. 258.
- Desmond Uchechukwu Onu. Treatment adherence mediates the relationship between HIV-related stigma and health-related quality of life. AIDS Care, 2021. Vol. 33, No. 10.
- Centers for Disease Control and Prevention. HIV and Substance Use.
- Johns Hopkins Medicine. Dealing with Discrimination When You Have HIV.
- HIV.gov. Mental Health.
- Gus Cairns. Stigma and discrimination against people with HIV are as big an issue as ever. NAM aidsmap. October 20, 2022.
