Chronic Illness and Shame

Source: Katie Willard Virant

We’ve all experienced the searing pain of shame. It’s a functional emotion, as it informs us when we fall short of our values. But what happens when shame is triggered - not by something we do and can correct - but by who we are and cannot change? What happens when we are ashamed because we are ill?

Chronic Illness Shame

Susan Sontag’s ground-breaking “Illness as Metaphor” describes the ways in which illness is ascribed meaning in our culture. To be ill is to be suspect: What did you do you cause your illness? What aren’t you doing to cure it? So illness is not just about the body malfunctioning; it’s about the ill person’s character. Shame comes from the internalization of this cultural belief that we are somehow at fault for getting ill and for continuing to be ill.

Looking and acting differently than “the norm” can also be a shame trigger. Illness can make our bodies look different and change the way we function in the world. We wish we could blend in, that our illness didn’t make us stand out as unusual. We may be a bit (or a lot!) anxious about how others notice our difference and what they think of us. We may be ever-mindful of how we are presenting ourselves to others, trying to hide the differences that mark us. This self-consciousness interferes with our ability simply to exist in the world, monopolizing precious psychic energy that could better be used for emotional growth.

We also may be ashamed of the vulnerability our illness creates. We may feel shame when we ask that our dietary restrictions be accommodated, when we apply for disability benefits, or when we use a disabled parking permit. Especially when our illnesses are not immediately visible, we may worry that someone will question our use of these benefits and say, “But you don’t look sick!”

How Shame Works

Shame warns us that social bonds are in jeopardy. There’s a worry that others are seeing us, judging us, and finding us so wanting that they will reject us. When shame is based upon something we cannot change, we tend to try to conceal the offending characteristic. When we’re ashamed of being ill, then, we don’t talk about our illness to others. We may try to “pass” as healthy, constantly monitoring our appearance, speech and behavior so that we can continue to keep shame at bay by hiding that which is shameful. Research on shame and chronic illness describes the deep fear that study subjects felt at being seen as a “complainer” or a “whiner” if they talked about their illnesses (Werner, Isaksen, & Malterud, 2004). If we cannot pass as healthy, we may withdraw entirely, avoiding social interactions in order to feel safe from our anxiety about others’ judgment of us.

Shame also affects our core identity, as we internalize the belief that we are not worthy to be seen for who we are. We may try to numb the pain linked to this belief with alcohol/drug use and other maladaptive soothing behaviors. It’s also likely that chronic, internalized shame will cause prolonged stress in our bodies and adversely affect our physical health (Dolezal & Lyons, 2017).

Shame promotes more shame, as we become ashamed of the fact that we are feeling shame. This shame spiral is characteristic of the experience of shame, and intensifies the painful nature of the emotion.

How to Combat Chronic Illness Shame

How to combat shame associated with chronic illness? I intentionally use the word “combat” because I want us to acknowledge that the shame we feel about being chronically ill is harmful. It’s not a neutral emotion; it is actively hurting us.

First, it’s important to notice and identify shame. What do you feel in your body when you experience shame? Is it a hot flush over your body, a tightening in your chest, a tingling in your limbs? What thoughts come to mind when you feel shame? Do you want to run and hide? Do your thoughts feel frozen? Do they feel muddled? These body and mind signals are your clues: when you experience them, you can name the experience as “shame”.

When you notice that you are experiencing shame, step back from the experience and analyze it. Wonder what has caused it and take note of your personal shame triggers. Perhaps the way illness affects your appearance is particularly triggering; maybe having to explain to people that your illness prevents you from doing certain things or requires accommodations feels terrible.

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As you keep track of all the ways that your illness triggers shame, reflect on the beliefs that underlie these triggers. Ask yourself: What am I afraid of? Generally, what we fear is that our illnesses make us unworthy of acceptance and love. We fear that people may be repelled by how our symptoms manifest in our bodies; that they may be annoyed by or dismissive of the ways in which our illness requires that we operate differently in the world.

Now ask yourself if these beliefs could be true. Spoiler alert: They could be true. There may very well be people in the world who will devalue you because of your illness. Follow-up question: Do you want acceptance from these people? Because you have choices, too, regarding who is allowed into your inner circle. If people see you as unworthy because you have an illness, you may come to the conclusion that THEY are unworthy because of their prejudice.

So let’s move to the people you call your friends. Is your fear that they will reject you due to your illness founded? You might ask them, as shame weakens dramatically when it is spoken. You might take a deep breath and say, “I feel ashamed that my illness makes me look different, act different, need different things. I’m afraid that you will find me too much or too unpleasant. Can we talk about that?” And then listen to what they say. It’s likely that you’ll be pleasantly surprised by your true friends’ responses. They will tell you you are not too much; you are not too unpleasant; you are worthy; you are loved.

Finally, actively work on internalizing your valuation of yourself. If you find yourself hating the limitations imposed by your illness, honor that feeling and allow yourself to grieve. But separate out grief from shame. When you say, “I’m so sad that my illness has changed my body,” you allow yourself to grieve. When you say, “I am so ugly due to my illness that small children will run screaming from me,” you are experiencing shame. Try to extricate yourself from that feeling, reminding yourself that you deserve better.

What are your experiences of illness-related shame? How do you cope with them? Please share in the comments below.