The Shame of Chronic Illness and Pain

If we speak shame, it begins to wither. (Brené Brown)

SHAME

Shame derives its power from being unspeakable…. If we cultivate enough awareness about shame to name it and speak to it, we’ve cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to wither. (Brené Brown)

Over the summer, I read Brené Brown’s fabulous book Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead (which follows her famous TED Talk on vulnerability). Brown’s book encourages us to dare to be honest about who we are rather than trying to hide our weaknesses and teaches that vulnerability helps us to live more wholeheartedly, connect more with others, and overcome the destructive burden of shame.

This book inspired me to reflect further on shame—what it is and what it means.

I have been part of the Christian church all my life, so I am used to hearing the word shame. We’ve been told it is something destructive that we can overcome, that the grace provided by Jesus’ death and resurrection can free us from its grasp—but is that so?

What Is Shame?

Words we use interchangeably with shame are embarrassed or humiliated, but shame often manifests as feelings of inadequacy, guilt, or regret and is something we try to hide and cover up. We might self-medicate to avoid thinking about shame, and we dread people seeing our shame.

Although shame is often seen as guilt, I have come to see a distinctive difference. Guilt is the feeling of embarrassment or regret about something you have done wrong. Shame, however, can be felt even when we have not done anything wrong. Shame is connected more to who we are and how others perceive us. [(Shame is) a painful feeling about how we appear to others (and to ourselves) and doesn’t necessarily depend on our having done anything.—Joseph Burgo]

Shame Had a Hold on Me

The more I thought about shame and how it manifests in my life, the more I became aware that it is intrinsically linked to the struggles I face at the moment. I began to recognize I felt ashamed that I was battling a chronic illness.

There we go. I have said it. It’s out in the open.

I feel ashamed that I am ill.

I feel ashamed that it has gone on so long.

Yes, I feel ashamed that I can’t seem to get well.

I feel ashamed that I cannot work and be busy like I used to be.

I feel ashamed to be sick!

When Googling the shame of chronic illness, I found insightful blog posts by Angelika Byczkowski. She writes so beautifully about her humbling journey with chronic illness and pain while sharing some of her battles with the chronic connective tissue disorder Ehlers-Danlos Syndrome (EDS):

When I recently read the phrase “I’m embarrassed to be sick,” it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling…I am ashamed of being sick… If all the people not yet affected by chronic illness acknowledged all the undeserved pain in this world, they would be forced to confront their own vulnerability to the same forces. Instead, we all prefer to believe we have the power to prevent such disasters in our own lives. Sometimes I even think, “If you’re so smart, why did you let this happen?”

Those words struck me to the core; I began to see that I felt like a failure for being sick. If only I had been a bit stronger or wiser, if only I had made better choices, if only I had been a bit more positive and had more faith, then surely I could have overcome this sooner.

Before I got ill, I carried the arrogance of good health, believing I was strong enough to shake off illness when others couldn’t because that was all I knew. I was not the type who would succumb to illness’ chains. I was always so healthy that I could overcome anything thrown at me. My faith and positive mindset would win.

Then, one day in January 2015, I fell off a step ladder and entered the world of invisible chronic illness and pain. I acquired a debilitating spinal CSF leak and a brain injury I have yet to overcome. I have been unwell ever since. Every day, I battle through chronic pain, physical and mental fatigue, a foggy brain, barriers to treatment, and the challenges of being unable to heal, get well, or get free.

Honestly, I feel ashamed on so many levels.

• I feel ashamed that I have become one of those people with chronic pain and illness. (I hate using the word chronic—and that reveals the stereotypes I had accepted before.)
• I feel ashamed to tell you that I feel weaker than I ever imagined possible, physically, mentally, and spiritually.
• I feel ashamed that my old positivity has taken a massive hit. Most days, I battle overwhelming feelings of despair at the thought of not getting better.
• I feel ashamed that I broke down mentally at Christmas. Exhausted, with nothing left for the fight, I seriously considered ending my life.
• I feel ashamed that the same “selfish” thought has returned at times since then, although thankfully not to the same depth. (In my view, suicide is not a wish for life to end. What is it, then? It is the only way a powerless person can find to make everybody else look away from his shame. The wish is not to die but to hide.—Orson Scott Card)
• I feel ashamed every time I have to update people on how I am, that I am still not well, that it’s gotten worse, and that it is not yet over.
• I feel ashamed when I can’t tell you I have finished the fight, overcome, won, and beaten this dreadful condition.
• Yes, I feel ashamed that I cannot yet testify that I am fully healed and whole, even though I believe in a loving creator God and Father, who can do the impossible. (O my God, I trust in You; Let me not be ashamed.—Psalm 25:2)
• I feel ashamed telling doctors that I can’t seem to get better and that I hope they will see past the chronic pain patient with the unusual condition and know that it’s not ‘all in my head’ so I can continue to get treatment.
• I feel ashamed when the scans are clear and don’t show any evidence of a CSF leak, when the treatment I receive doesn’t fix me, or when my symptoms don’t always fit with the diagnosis.

Each day this drags on, the shame gets worse. Each day, the shame is becoming almost as much of a burden as the illness itself. Each day, the shame is debilitating and makes me feel small. Each day, the shame is robbing me of my voice and tempting me to retreat from the world—and it has to stop! I HAVE TO BREAK FREE FROM SHAME!

MAKING THE UNSPEAKABLE SPEAKABLE

So today, I am making the unspeakable speakable for myself and the multitudes who travel this dark road of chronic illness and pain. I am speaking out my shame so it can no longer chain me up with lies. I acknowledge the space shame has taken up in my thoughts so we can tear down its strongholds together.

Today, I chose vulnerability to speak the unspoken so you and I won’t suffer in silence.

Today, I choose to fight shame so that even though this condition taunts me daily (trying to persuade me I can never be free), it doesn’t have to define everything I am, everything I do, or the relationships with those around me.

So today, whether you are battling chronic illness and pain or know someone who is, I pray that together we can tear down the chronic pain stereotypes (those that perhaps even we once secretly adhered to) and no longer allow shame to rule our and others’ lives.

If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to wither. (Brené Brown)

First published at beckyhillblog.com. *Adapted and published with permission.

PRAYER

Dear Father, we can feel so much shame about our illnesses. Help us to see the lie that this is, to name it, and to break free from it. When we feel tempted to retreat from the world, remind us that You love us just as we are. Please put people in our paths to walk alongside us in truth. In Jesus’ Name, amen.

QUESTIONS FOR REFLECTION

• How would you define the difference between guilt and shame?
• Jot down some ways you feel or have felt shame about your chronic illness.
• Who is a person you trust that you can speak the unspoken to today?