Chronic Illness and Stigma
Stigma can be categorized as enacted stigma, internalized stigma, or anticipated stigma.
Stigma is associated with low self-esteem, poorer patient outcomes, and other effects.
Tips for managing stigma include understanding it, naming it, analyzing the feelings it causes, and more.
“She’s that girl with the weird disease,” I heard him say. My college classmate had seen my name on the dry-erase board hanging on my dorm room door, and he proceeded to tell his friend how I was “really sick with some random, strange illness." Thirty years later, I can still feel my stomach knot and my throat clench. I remember feeling unable to move or speak, even as I wanted to throw open the door and say, “That’s me you’re talking about!"
If you live with chronic illness, you’ve likely faced judgment from others. Sometimes it’s spoken; sometimes it’s tacit. Sometimes it’s an action personally directed against you; sometimes it’s an occurrence in the culture-at-large (as when diseases or symptoms are punchlines for jokes). But if you’ve felt different and perceived as “less than,” there’s a name for that. What you’ve experienced is stigma.
What is “stigma”?
The word “stigma” is derived from a Greek word referring to a mark on the body (Chelvanayagam, 2014). Indeed, people who are stigmatized are socially marked as different and deviant from the norm (Goldberg, 2017). This deviance from the norm is threatening to the majority group, causing them to view the person who is different as “tainted” and “discounted” (Grytten & Maseide, 2005). There is a judgment in stigmatization that happens so quickly that it’s often not conscious, an implicit belief that the person with the difference is an offender who should be excluded from society (Grytten & Maseide, 2005).
It’s important to keep in mind that it’s not a disease or health condition that stigmatizes people; it’s people who stigmatize other people (Goldberg, 2017). There are many differences in health conditions that are accepted as non-deviant, including vision issues corrected by prescription glasses and the common cold. A stigmatized health condition is not inherently bad; rather, it is stigmatized because of the associations that people attribute to it.
Three types of stigma
There are three types of stigma (Chelvanayagam, 2014). “Enacted stigma” is the actual experience of stigma. It’s people pointing at and whispering about someone who looks or acts differently due to illness. It’s a potential employer refusing to hire a person because of their belief that illness will adversely affect job performance. It’s a joke about illness symptoms on television (bowel dysfunction, herpes, speech impediments) that everyone thinks is hilarious. It’s lack of easy access to buildings and transportation.
“Internalized stigma” occurs when an individual takes in and incorporates the negative beliefs that society holds about her illness. People with internalized stigma often feel ashamed, dirty, and “bad."
“Anticipated stigma” refers to the expectation a person has that he will be stigmatized by others. Anticipated stigma can create anxiety about social interactions.
Effects of stigma
Stigma is correlated with low self-esteem, decreased overall health, and poorer patient outcomes (Chelvanayagam, 2014). Stigma dehumanizes people, placing them outside of the social fabric. Chronically ill people often are questioned by acquaintances and strangers: “Why do you have to go to the bathroom all the time?” “You’ve become very thin; do you have an eating disorder?” “Why are you parking in a disabled parking spot when you can walk?” “Why are your hands trembling?” “Why do you walk funny?” The underlying judgment that is common to these questions is: “What is wrong with you? You look and/or act so different from the norm that it is noteworthy and disturbs my expectations.”
Experiencing these intrusions leads both to an internalization of the judgment behind them and an anticipation of more judgment. A person with chronic illness may think, “Perhaps I am not normal. I am so deviant that I attract negative attention. I’d better try to hide what is different about me in order to avoid further judgment.”
Withdrawal from social interactions is a common response to stigma, leading to isolation, depression, and anxiety (Bakula et al., 2019). Interestingly, many of my chronically ill clients are reporting anxiety about the lift of COVID-19 quarantine, as they have felt less exposed to stigma due to fewer social interactions.
How to manage stigma
The first step in managing stigma is to understand what it is. People who live with chronic illness often have a sense of shame about their illness that bleeds into their entire identity. When we understand that stigma is imposed upon us by other people, we can begin to sort out how much of that judgment we are willing to take on as our inner truth.
Notice and name stigma when it happens to you. You may feel a flushing of your face, a tightness in your chest, and/or a wish to hide when you feel stigmatized. Use these bodily sensations as clues to name what is happening. Instead of glossing over the feelings or associating them with personal deficit, identify the experience as stigma.
Acknowledge and analyze the feelings evoked. Your internal dialogue may go something like this: “Wow, this feeling hurts. Am I OK? This is stigma. It has nothing to do with my inherent worthiness as a person. It has to do with stereotypes that surround illness.”
Maintain strong connections with people who value you. Trusted friends and support groups are important in keeping us grounded in our worth. They can help counter the negative self-beliefs caused by stigma.
Think about how you’d like to address stigma as it comes up. There’s no right way to do this. Some people are most comfortable ignoring painful interactions and processing them with a friend after the fact. Others feel most empowered when they address situations head-on, communicating their emotions and setting boundaries in the moment.
Practice taking up space. I talk a lot with my clients about taking up space, both physically and emotionally. Stigma makes us want to contract, to hide, to shrink down so as not to be seen. Practice expanding the space you take up. Go out in public; speak your mind; work on feeling worthy of existing in the world, exactly as you are.
Have you felt stigmatized due to illness? How did it make you feel? How will you cope with stigma in the future?