As an autoimmune patient and nurse coach, I am asked frequently about how to handle the guilt that comes with a chronic illness – guilt about having to change plans last minute, guilt about being unable to keep up with our kids, guilt about depending on others and feeling like a burden, guilt about having food restrictions, guilt about calling in sick to work, and the list goes on and on.

Emotions that accompany a chronic illness diagnosis are troubling, especially those that we label as “negative,” but they serve a purpose. They are messengers that alert us when something needs our attention and motivate us to take action.

For example, guilt can be a helpful emotion, one that allows us to repair and grow our relationships with ourselves and with others. On the other hand, shame is an emotion that can cause a lot of additional pain and suffering in the chronic illness experience.

What I’ve observed is that when most people say that they are experiencing guilt, what they really mean is that they are experiencing shame.

While we may use the terms guilt and shame interchangeably, it’s important to recognize a few fundamental differences between them.

What are the differences between guilt and shame?

We experience guilt when we feel that something we did (a specific behavior) was not in alignment with our core values. This motivates us to right the perceived wrong (and examine our values).

For example, maybe we find ourselves screaming at our kids when we are in pain and exhausted or we fail to give our employer adequate notice when we cannot meet an approaching deadline because of unexpected symptoms. While the ups and downs of chronic illness are unpredictable and frustrating, it wouldn’t be wrong to feel guilty in these situations.

The beauty of guilt is that it moves us to empathy. Because we genuinely care about those around us, we are interested in how our feelings, thoughts, and behavior affect them when we are sick.

Guilt shows us opportunities to repair our relationships when we make a mistake:

  • We may try to undo the harm we caused and offer an apology.
  • We may discern that it would be best to plan for when similar circumstances arise in the future to avoid hurting others.
  • We may reexamine our values and decide we were unjustly critical of ourselves, thus repairing our relationship with ourselves.

On the other hand, we experience shame when we feel that who we are (our identity as a person) is flawed, inadequate, and inferior. This paralyzes us to inaction.

In the examples above, rather than merely feeling guilty for raising our voice or for inconveniencing our boss, we tell ourselves that we are a terrible mother or a bad employee. This type of negative, self-directed blame leads to fear, depression, grief, and anxiety and causes withdrawal from the connection and support that we need most.

The challenge of shame is that it is rooted in self-consciousness. When we are overly concerned with how we appear to others, we fall into people-pleasing tendencies to try to manipulate their opinion of us.

Shame causes us to neglect or abandon our relationships when we feel like a failure:

  • We may want to run away, hide, disappear, or die.
  • We may be overly sensitive to perceived criticisms and feel rejected at our core.
  • We may develop chronic low self-esteem and a warped self-image.

Where does shame originate?

Shame is a combination of failure and pride. As we grow to maturity, we become aware of two things: 1) Our personal limitations and weaknesses and 2) the expectations and opinions of others.

Less than perfect health feels like a huge failure in a culture that praises productivity.

Showing our true selves feels too risky, so we push through and may even blame ourselves for our symptoms. Accepting our limitations is not easy and we take pride in identifying ourselves as the type of person who doesn’t show their weakness or pain.

We go to great lengths to hide our symptoms from friends, family, employers, strangers, and doctors for fear of being judged unfairly and because we want to feel normal. The problem is that over time this only leads to worsening health problems, increased symptoms, and more shame about asking for the help we really need, thus compounding our suffering.

What is the remedy for shame?

The truth is that all of us are imperfect (even people without a chronic illness). We all experience human weaknesses and circumstances beyond our control. We all fall short of our ideals on a regular basis. (It’s interesting to note that many spiritual traditions acknowledge this human condition and focus on redemption that comes from a higher power.)

Shame results when we try to hide from the truth that we have limitations. When we are stuck in denial, we become defensive. In that state, we can’t grow, we can’t be creative, we can’t relate to others, and we can’t heal.

If shame results from hiding from the truth, then the antidote is to embrace it.

Radical honesty about our shortcomings opens the door to forgiveness and love (both from ourselves and from others), which in turn leads to feelings of acceptance and a sense of belonging (which is what we really wanted all along).

We stop contributing to the dangerous culture of shame, scarcity, and perfectionism when we stop making ourselves and others feel guilty about not doing more, when we stop comparing ourselves with others, and when we stop criticizing those who don’t measure up to unreasonable standards.

When we turn on the light of love, we leave no room for the darkness of shame.

In the following articles, I will share some practical steps for overcoming guilt and shame with chronic illness.

My Self-Caregiver Journal

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