What to Do With Guilt, Shame & Chronic Illness

If Your law had not been my delight, I would have perished in my affliction.

Psalm 119:92, ESV

medicines near the person s face
Photo by cottonbro

If you have been reading my blog for awhile, you are aware of my personal health challenges. In fact, I have been afflicted with fibromyalgia and chronic migraines for nearly 16 years. The battle that most can’t know, unless you also have a chronic illness, is the guilt and shame that begin to snuggle up next to you when the disease becomes chronic. When symptoms refuse to fade away or continue to reappear and your spouse or family member becomes your caregiver, as well…

The guilt or shame can be overwhelming.

Logically, it may not make sense to those who love you. I mean, you didn’t ask for the disease! Your doctors are serious about the condition(s) and treat you accordingly. Your spouse sees that you are indeed, suffering and that the active, vivacious person he once knew is a shadow of herself.

But it’s extremely difficult to let go of the person you used to be…those activities or projects you were able to do then. You feel guilty to have to cancel at the last minute on so many social events or appointments due to (for me) a migraine or pain, etc. Gradually, it becomes easier not to make those plans for get togethers or social events. But ongoing isolation isn’t healthy, either.

Oh, what a conundrum.

photo by Daria Kruchkova

Shame and Chronic Illness

To be ill is to be suspect: What did you do you to 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.

Katie Willard Virant, MSW, JD, LCSW

Therefore, we aren’t simply dealing with our own self-talk or perceived thoughts of loved ones. The entire Western culture has a bias toward chronic disease. And may I say, especially if you don’t look sick. If the illness has effected how we look, this may cause us to feel ashamed. Shame can create anxiety regarding how we’re accepted by others; this uses up emotional energy we need for healing.

In addition, there is a feeling of vulnerability that comes with chronic illness. In a world that values independence and strength, being dependent on others can feel like weakness. It may be shame inducing if you have had to apply for disability or need to park in disabled parking. What are others thinking as you walk toward the store when you don’t look sick?

woman suffering from a stomach pain
Photo by Andrea Piacquadio

What Does Shame Tell Us

Many studies report an association between shame and depression. Furthermore, shame is associated with the desire to undo aspects of the self (Niedenthal et al., 1994). It’s likely because shame alerts us that others are judging us, finding us lacking, and will reject us.

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.

Katie Willard Virant, MSW, JD, LCSW

I understand the desire not to be seen as a complainer or whiner. Truthfully, I have steered clear of support groups because I didn’t want to become a whiner. (Please understand me, support groups are a wonderful, helpful tool; I just erroneously thought they were for everyone else!) To my detriment, until recently, I was extremely reluctant to bring up my suffering even in prayer groups.

What did it say about my prayer life if my prayers for healing weren’t answered?

Yet another lie I believed.

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Guilt and Chronic Pain

Chronic primary pain conditions are characterized by significant functional disability, emotional distress, and diagnostic uncertainty. Health-related guilt associated with coping and living with chronic pain is poorly understood…The review of qualitative studies resulted in three themes, relating to the management of pain, diagnostic uncertainty/legitimizing pain, and how participants’ actions or inactions affect others…The findings demonstrate that health-related guilt is an important psychological factor associated with more pain and poorer function in people with chronic primary pain condition.

Danijela Serbic, Michael Evangeli, Katrin Probyn, Tamar Pincus

Shame is about who we are, but guilt is about what we do. Of course, there is a healthy guilt when we have committed a specified offense or crime. However, having an illness over which we have no control doesn’t fall into either of those categories.

Nevertheless, countless people feel guilty for being ill and causing their loved ones to need to take care of them or take up more responsibilities due to their pain/disease.

photo by Lina Trochez

What to Do With Guilt & Shame Regarding Chronic Illness

One of the first steps is to identify the shame or guilt. Is there a place you feel it in your body? What are your thoughts at the time? Do you want to hide or leave the situation?

We have the power to change our thoughts.

Misplaced guilt over an illness or chronic pain which you cannot control only brings you further harm. Admittedly, acceptance of our new reality is a long process, but one we need to begin. Continually looking back longingly delays our emotional healing. Moreover, it keeps us in a state of anxiety and sometimes anger.

Next, if you haven’t up to this point, allow yourself to grieve the life you had before the chronic illness. It took me awhile to do that because I spent years not accepting that there was no cure. I am not suggesting we immediately capitulate to the disease. The fight to be who we believe we are is normal.

However, at some point, acceptance and grieving our losses is the healthiest move for us…and those we love. In reality, there are other areas of life we can focus on now that perhaps we never would have looked at before.

pink pencil on open bible page and pink
Photo by John-Mark Smith

For Me…

The Psalms of Lament were (and are) a huge comfort for me. David poured out his heart to God over various things and this gives me freedom to do the same. God isn’t annoyed by our cries for help or even when we ask where He is in the midst of our trouble. In fact, He invites us to come to Him during those times.

Jesus said, Come to Me, all of you who are weary and burdened, and I will give you rest., Matthew 11:28. When I am willing, I find that rest.

James told us to be joyful when we face trials, (James 1,) and Paul said he was actually given a thorn in the flesh, believed to be a type of physical affliction, to keep him from being proud, (I Corinthians 12:7-10.) However, after asking God 3 times to remove his affliction…

And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.

I wish I could say that my life is in complete alignment with Paul’s…that I rejoice in my infirmities and weaknesses. There are still many days when I fight against these thorns, but looking back, by God’s infinite mercy, I see that He has enabled me to gain more acceptance. Ever so gradually, I am learning that He is indeed strong in my weakness.

I'm interested in what you think!