Do your part to reduce stigma
Lift the Weight of Words
“Words are things….They get on the walls. They get in your wallpaper. They get in your rugs, in your upholstery, and your clothes, and finally in to you.”
– Maya Angelou
Discover how you can help reduce stigma among all moms and babies so they can get the support and care they need.
This toolkit is designed to raise awareness about the impact of stigma for all March of Dimes staff and partners.
The Effects of Stigma
Poor Quality of Life
Less Access to Healthcare
Reduced Adherence to Treatments
Illness and Death
Why does stigma matter?
Stigma keeps people from the best possible care. Women with substance use disorders, infectious diseases, mental health, or other health conditions can often feel judged and blamed by family, friends, and healthcare providers, which can keep them from getting the care they need.
STIGMA: UNDERSTANDING THE PROBLEM
“If we do not appreciate the nature and impact of stigma, none of our interventions can begin to be successful.”
Edward Cameron, Constitutional Court Justice, South Africa
What is stigma and why does it happen? Click the tabs below to understand the roots of stigma and recognize the signs of stigma in your work.
What is stigma?
Health-related stigma is “a social process or personal experience related to a health condition, characterized by the perception of exclusion, rejection, and blame, and contributes to psychological, physical, and social morbidity.”
— van Brakel et al., 2019
Why does stigma matter?
Barriers to Health
Stigma has consequences for the person who is stigmatized. They often feel ashamed and unworthy, resulting in self-stigma, lower self-esteem, and depression. The connection between stigma and barriers to health and wellness is supported by research (van Brakel et al., 2019). Although the types of stigma may vary by health condition and across cultures, the effects are notably alike.
Stigma or the fear of stigma may stop someone from sharing their health condition with partners or family members and from accessing the health services and support services they need. They know if they disclose their health condition, they will be labelled and stigmatized. For example, research shows that the more people living with HIV are stigmatized, the less willing they are to get tested for HIV.
People who experience health-related stigma also experience:
Why does stigma happen?
Beliefs and Fears
Stigma is driven by our conscious and unconscious beliefs and fears. To cope with feeling vulnerable, we stigmatize others to allow ourselves to feel safer, as if whatever happens to “them” could not happen to “us.”
Emotionally Respond to an Individual
The process begins when we have a negative emotional response, such as fear, toward another person or social group.
Distinguishing and Labeling Differences
To cope with these negative emotions, we try to create social distance between the group and ourselves. To create this distance, we apply a negative label to the person or group.
We also might:
These beliefs create a stereotype of people within a group. Stereotyping is when we prejudge an entire group, which blinds us to differences among the people within that group.
Our internalized bias can cause us to
What does stigma look like?
Depending on the situation, stigma can look and feel different.
Stigma is most readily found in the language we use, like calling someone with substance use disorder a “junkie” or calling someone with an STD “promiscuous.”
It typically involves making judgments about people that are revealed through gossiping, name calling, blaming, and shaming. Stigma also can be expressed just by the way we look at someone or ignore them entirely.
And stigma isn’t always seen or heard. It can be felt even when no obvious act of discrimination occurs. For example, a doctor might spend less time with a pregnant woman who smokes cigarettes, thinking she’s not taking her pregnancy seriously.
People are often unaware that their words or behaviors are stigmatizing.
Levels of Stigma
Perception of the prevalence of stigmatizing attitudes in the community or among other groups (such as healthcare providers).
Example: A person with a sexually transmitted infection feeling like their new partner will judge them for getting infected in the past.
Fear of stigma whether or not it is actually experienced.
Example: A woman fearing that her healthcare provider will blame her for contracting Zika while traveling in Puerto Rico.
When someone accepts the blame and rejection of society’s stigmatizing attitudes and behaviors. They feel the weight of stigma and believe they are “less than” and unworthy.
Example: A person with a disability feeling they are unable to achieve the same accomplishments or opportunities because others treat them as different or “lesser than.”
Interpersonal acts of discrimination based on stigmatizing attitudes or beliefs.
Example: Crossing the street when you see someone who is homeless or not hiring a caregiver because of her race.
Physical, cognitive (such as thoughts), and emotional responses experienced by a person after being exposed to stigmatizing attitudes, beliefs and behaviors.
Example: A new mom feeling that she is weak or crazy for experiencing postpartum depression.
Observed or Vicarious Stigma
Witnessing stigmatizing behaviors toward someone else.
Example: Watching others stare in disgust at an overweight person.
Stigma by association that is extended to the family or other caregivers of a stigmatized individual. This form of stigma affects people who are associated with stigmatized groups and who often face stigma themselves.
Example: The parents of an adolescent who has an opioid use disorder (OUD) may be stigmatized themselves or a healthcare provider who is stigmatized for treating people with OUD.
Organizations, social institutions, and workplace rules or policies that constrain opportunities, resources, and well-being for stigmatized groups (Stagle et al., 2019).
Example: Not having wheelchair access in healthcare clinics and community-based organizations.
Negative attitudes, beliefs, and behaviors held within a community, culture, or group. This is also called “social norms” (National Academy of Sciences, 2016).
Example: The belief that people on Medicaid are lazy or a drain on the system.
National and local laws and policies that constrain opportunities, resources, and well-being for stigmatized groups (Hatzenbuehler, Phelan & Link, 2013).
Example: Not allowing lactating mothers to breastfeed in public.
Intersectional or Layered Stigma
A person may experience more than one type of stigma. For example, they may experience stigma because they are a racial or ethnic minority and because they have a mental illness.
1. Be aware of your own prejudice
A first step toward reducing stigma is to recognize that you hold judgmental attitudes and beliefs. Try picking one day and tracking every time you think something judgmental about another person.
2. Always use person-first language
By using person-first language—“someone with opioid use disorder” as compared with “an addict”—you can also change others’ beliefs and perceptions. Don’t perpetuate stigma by defining people by their condition or situation. Better health is an ongoing effort for all of us.
3. Educate yourself and others
Show this toolkit to your coworkers, friends, and family who might want to reduce stigma. Share on social media how you’re making a difference to reduce stigma.
4. Make your work a “judgment-free zone”
Encourage your workplace to sign a letter of commitment to be free from judgment and stigma. Also, consider asking employees to sign a pledge or you can post “judgment-free zone” signs around the building.
5. Start conversations about stigma
Share your own experiences with stigma to build empathy with others. Instead of calling out an individual for stigmatizing behaviors, share a time when you internalized negative beliefs based on stereotypes. This is called “self-stigma.” Your story can be a conversation starter about how pervasive and harmful these stereotypes can be.
6. Form a stigma-free task force
Gather a team of people across all levels of your workplace or organization and kick off a stigma-free task force by developing an action plan to reduce stigma. The task force can organize special events or trainings about reducing stigma. And share social media posts about their efforts.
Be a Change Agent
You don’t have to alter your entire workplace or community to help reduce stigma. Small changes can have an impact and lead to even bigger changes.
Here are 6 ways you can reduce stigma, starting with quick wins and leading to bigger efforts.
The learning and growing doesn’t stop here.
Check out these additional resources to expand your stigma knowledge and find more ways to create change.
The Power of Perceptions and Understanding: Changing How We Deliver Treatment and Recovery Services. This four-part webcast series educates healthcare professionals about the importance of using approaches that are free of discriminatory attitudes and behaviors in treating individuals with substance use disorders (SUDs) and related conditions, as well as patients living their lives in recovery. https://www.samhsa.gov/power-perceptions-understanding
Stigma and OUD [Opioid Use Disorder]. This course from the Providers Clinical Support System (PCSS) is led by Nurse Practitioner Vanessa Loukas, a PCCS clinical expert. She discusses the issue of stigma in treating patients with opioid use disorder—from the patients to the providers who treat them. https://pcssnow.org/education-training/training-courses/stigma-and-oud/
The Health and Discrimination Framework
The health and discrimination framework figure below shows the stigmatization process as it unfolds across the socioecological health spectrum. To “underscore that all individuals can anticipate, perceive, internalize, experience, or perpetuate health-related stigma,” the framework does not distinguish between those who are “stigmatized” and the “stigmatizer” (Stangl et al., 2019, p. 4).
This framework is useful in helping to identify when, where, and how to make changes to reduce stigma.
Figure Source: Stangl et al., 2019
Cooper, S., & Nielsen, S. (2017). Stigma and social support in pharmaceutical opioid treatment populations: A scoping review. International Journal of Mental Health and Addiction, 15(2), 452–469. http://dx.doi.org/10.1007/s11469-016-9719-6
Corrigan, P.W., Druss, B.G., & Perlick, D.A. (2014). The impact of mental illness stigma on seeking and participating in mental health care. Psychological Science in the Public Interest, 15(2), 37–70. https://doi.org/10.1177/1529100614531398
Corrigan, P.W., & Nieweglowski, K. (2018). Stigma and the public health agenda for the opioid crisis in America. International Journal on Drug Policy, 59, 44–49. http://dx.doi.org/10.1016/j.drugpo.2018.06.015
Dawson, D.A., Grant, B.F., Stinson, F.S., Chou, P.S., Huang, B., & Ruan, W.J. (2005). Recovery from DSM-IV alcohol dependence: United States, 2001–2002. Addiction, 100(3), 281–292. http://dx.doi.org/10.1111/j.1360-0443.2004.00964.x
Hatzenbuehler, M.L., Phelan, J.C. & Link, B.G.(2013. Stigma as a fundamental cause of population health inequities. American Journal of Public Health. Am J Public Health.103:813–821. doi:10.2105/AJPH.2012.301069
Howard, H. (2015). Reducing stigma: Lessons from opioid-dependent women. Journal of Social Work Practice in the Addictions, 15(4), 418–438. http://dx.doi.org/10.1080/1533256X.2015.1091003
Johnson, L.A., Schrier, A.M., Swanson, M., Moye, J.P., & Ridner, S. (2019). Stigma and quality of life in t patients with advance lung cancer. Oncology Nursing Forum, 46(3), 318–328. doi:10.1188/19.ONF.318-328
Kamaradova, D., Latalova, K., Prasko, J., Kubinek, R., Vrbova, K., Mainerova, B., … Tichackova, A. (2016). Connection between self-stigma, adherence to treatment, and discontinuation of medication. Patient preference and adherence, 10, 1289–1298. doi:10.2147/PPA.S99136 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4966500/pdf/ppa-10-1289.pdf
Latkin, C.A., Gicquelais, R.E., Clyde, C., Dayton, L., Davey-Rothwell, M., German, D., …Tobin, K. (2019). Stigma and drug use settings as correlates of self-reported, non-fatal overdose among people who use drugs in Baltimore, Maryland. International Journal of Drug Policy, 68, 86–92. doi:10.1016/j.drugpo.2019.03.012
Livingston, J.D., Milne, T., Fang, M.L., & Amari, E. (2012). The effectiveness of interventions for reducing stigma related to substance use disorders: A systematic review. Addiction, 107(1), 39–50. doi: 10.1111/j.1360-0443.2011.03601.x
Mannheimer, S., Wang, L., Wilton, L., Tieu, H.V., del Rio, C. … Mayer, K.H. on behalf of the HPTN 061 Study Team. (2014). Infrequent HIV testing and late HIV diagnosis are common among a cohort of black men who have sex with men (BMSM) in six US cities. Journal of Acquired Immune Deficiency Syndrome, 67(4), 438–445. doi:10.1097/QAI.0000000000000334
National Academy of Sciences, Engineering and Medicine. (2016). Ending discrimination against people with mental and substance use disorders: The evidence for stigma change. Washington, DC: The National Academies Press. https://doi.org/10.17226/23442
Pescosolido, B.A. (2013). The public stigma of mental illness: What do we think; what do we know; what can we prove? Journal of Health and Social Behavior, 54(1), 1–21. https://doi.org/10.1177%2F0022146512471197
Stangl, A.L., Earnshaw, V.A., Logie, C.H., van Brakel, W., Simbayi, L.C., Barré, I., & Dovidio, J.F. (2019). The Health Stigma and Discrimination Framework: A global, crosscutting framework to inform research, intervention development, and policy on health-related stigmas. BMC Medicine, 17, 31. https://doi.org/10.1186/s12916-019-1271-3
van Brakel, W.H., Cataldo, J., Grover, S., Kohrt, B.A., Nyblade, L., Stockton, M., Wouters, E., & Yang, L.H. (2019). Out of the silos: identifying cross-cutting features of health-related stigma to advance measurement and intervention. BMC Medicine, 17, 13. https://doi.org/10.1186/s12916-018-1245-x
What You Can Do
Discover how you can make a difference by reducing stigma in your workplace and community.
It’s natural for us to associate certain things and beings with broader groups and patterns of behavior. It’s a biological trait that helps us process and approach situations with caution. For example, we learn to group animals that have large bodies, quick movements and sharp teeth, like lions, with other predators. Doing this helps us proceed carefully and protect ourselves by not petting the lion like we would a house cat.
But when we do this with people, we tend to stereotype them and give them a set of associated traits and pass judgment without getting to know the person first. Just thinking these labels to ourselves can affect how we treat and interact with others, which can ultimately harm their health. For instance, if we assume a woman who is overweight is lazy, we might not invite her to engage in physically strenuous activities in our community or workplace. But she might want to participate. By not inviting her to join in, we create a barrier to health and perpetuate feelings of social isolation.
When you meet someone for the first time, imagine that you have a chalkboard. When the labels, beliefs, and judgments spring to mind, write them on your imaginary chalkboard. Acknowledge them. Then, use an imaginary eraser and wipe the slate clean. Everyone has a story to tell, with unique circumstances that influence where they are today. Don’t assume to know what’s going on below the surface. Pause. Listen. Discover the person inside. Not only will this reduce the stigma they may feel, but you can uncover subtle aspects of their life that affect their health and find ways to help.
Stories of Stigma
See me for who I am. I am not a label. I am not my health condition. I am me.
Click each image below to see and hear stories from people impacted by stigma.
Stories are based on actual people and events. However, to protect privacy, some details have been changed or stories compiled.
Say This, Not That
Make a commitment to stop using words that stigmatize, dehumanize and are harmful to others.
And not just when you’re talking to someone with a stigmatized health condition. It might not always seem obvious, but how we speak and the words we put out into the world affect the perceptions and attitudes around us. Health conditions and the challenges someone is facing can be invisible. You don’t always know who you are talking to and who else is listening.
Use Person-First Language
Person-first language puts the person before the diagnosis. It emphasizes the person, not their medical condition or disability.
Rearranging words is a powerful way to not let the diagnosis define the person.
To see alternative language for some stigmatizing words, click on the diamonds below.
Person experiencing homelessness
Person living with HIV
Infant exposed to substances in the womb
Person with disabilities
Person who is receiving social assistance benefits
is born prematurely
Person living with a mental illness
Person with a substance use disorder
Infant infected with Zika