Communication and Chronic Illness

Source: Katie Willard Virant

We live in connection — to people, institutions, and the culture at large. Communication is the web that creates and facilitates those connections. We learn who we are by absorbing communications from the world around us — from family and friends, from movies and television shows, from laws that are passed, and from the news that is reported. Communication is powerful: It tells us who belongs and who does not. It tells us what is valued and what is not. It tells us what is right and what is not. Of course, these are subjective judgments that change over time and among cultures. But communication reinforces these subjective assessments so masterfully that we can grow to believe that they are set in stone and just the way things are.

Communication researchers call communication that excludes, degrades, silences, or stereotypes a group of people “disenfranchising." Disenfranchising communication creates and/or reinforces a belief that certain groups are of less value and undeserving of societal acceptance. Most of us who live with chronic illness experience feeling like an outsider, and disenfranchising communication contributes to this feeling.

Disenfranchising communication about chronic illness

Three types of disenfranchising communication about chronic illness are silence/omission, dismissal, and hostility. If you live with chronic illness, you’ve likely experienced all of these.

Silence/omission is pretending that one’s chronic illness experience doesn’t exist or that the losses suffered due to illness are not worth noticing. In interpersonal communication, this can look like friends never asking about your illness experience or changing the subject when you mention your it. In the community at large, it can look like spaces that are not accessible to people with disabilities. There’s not overt discrimination, just an overwhelming silence. The underlying message can feel like: “You’re welcome here, but your illness is not.”

Dismissal involves a belittling of one’s chronic illness experience. Statements like “It’s not that bad” and “Look on the bright side” tell us to shrink our chronic illness into more appealing packaging. Portrayals of chronically ill people on television shows and in movies — often highly sanitized — also tend to dismiss the difficulties of living with illness.

Hostility is the expression of a belief that chronically ill people are worth less because of their illness. Examples include making fun of chronic illness symptoms and statements like, “You are a burden on the medical system.” Public health policies that do not protect people living with chronic illness can also be seen as hostile to chronically ill people.

Clapping back: Memorable messages

It’s important that we actively reject the narrative that disenfranchising communication peddles. To that end, we need to interrupt disenfranchising statements every chance we get. Researchers identify communication that startles us out of complacency as “memorable messages." Memorable messages change how we think. They stick with us and re-shape who we are and what we believe. Memorable messages designed to re-enfranchise people living with chronic illness include the following:

• Education in response to silence. Sometimes our friends don’t know the myriad ways that chronic illness makes life more difficult. So educate them! Fill them in on what is happening to you and how it makes you feel. If you are grappling with symptoms, tell them. If you are feeling sad or anxious or angry about your illness, let them know. If it’s hard to find the words to express how you feel, look at resources like Christine Misanderino’s “Spoon Theory” and think about giving copies to friends and family.
• Challenge in response to dismissal. When someone tells you that your illness isn’t so bad or to look on the bright side, or recommends a “surefire” cure, challenge their assumption that these comments are helpful and true. Remind them that you — not they — are the expert on your experience. Responses include: “Actually, my illness IS that bad. Why would you say that? Are you in my body?” Or, “It’s not helpful to me when you try to cheer me up. Could you just offer me your presence when I tell you what I am going through?” Or, “I wish I could be cured as easily as you imagine. Unfortunately, it doesn’t work like that for most of us.”
• Naming the harm in response to hostility. Pointing out the harm done by statements and policies that devalue chronically ill people is important. For example, you might say in response to a hostile comment, “You seem to believe that my illness makes me less worthy. That’s wrong. It’s a harmful belief that hurts me and the many, many other people who live with chronic illness.”

Conclusion

Pay attention to the communications about chronic illness that you take in. What do you hear from family, friends, and institutions? What do you see in the media? What do governmental policies about chronic illness communicate? How do these communications affect you?

Be aware that your responses to these communications are powerful, affecting you, others, and the world at large. Look for opportunities to express “memorable messages” that positively change perceptions about chronic illness and allow you to show up in the world authentically and fully.