Grappling with the Shame of Invisible Illness

SHAME OF INVISIBLE ILLNESS

In 2016 (over 20 months after a ladder fall left me with a debilitating spinal fluid–CSF–leak), I realized how much shame I was carrying because I was still unwell.

Reading Brené Brown’s book, Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead, caused me to realize how destructive shame can be in our lives and relationships.

Shame derives its power from being unspeakable…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)

I BELIEVE MANY PEOPLE CARRY SHAME

I believe many people who are chronically ill carry shame.

• Shame for their need to be heard, supported, and helped along their difficult journey.
• Shame that they are even ill in the first place and unable to overcome it.
• Shame from doctors and sometimes even family members and friends who wonder if it’s all or partially in our heads.
• Shame that no matter how much we try to engage in life and push through the pain, we are so exhausted that we feel we’ve run a marathon after being whacked on the head with a baseball bat.
• Shame that we sound like we’re complaining and being negative.
• Shame that even when we look well, we’re not (the shame of invisible illness).
• Shame when the tests do not correspond with the severity of our symptoms.
• Shame that we lack clear, non-subjective, medical “evidence.”
• Shame when someone asks about the headache, and we want to scream, “It’s not just a headache! Please stop calling it just a headache!”
• Shame because of what we can’t do anymore.
• Shame that we no longer feel like fully functioning members of society.
• Shame that we can’t even fathom what a day with no pain and symptoms feels like anymore.
• Shame that we must spend so much time in bed out of necessity, not relaxation.

The shame can pile up.

Shame upon shame.

Shame upon shame upon shame.

FINDING FREEDOM FROM SHAME

Although I have found much freedom from shame over the last year, occasionally something new brings it back to the surface. It creeps up, attempting to sink its toxic claws into my thinking and emotions – then I realize there’s still some lingering shame or its sticky residue refusing to leave.

So I choose again to speak it out, to dig deep and choose calmness, kindness, thankfulness, love, and hope – which is not easy!

Though I am only one voice, I speak for many, for it is ONE thing I can do.

Today I choose again to throw off my shame by SPEAKING IT OUT – choosing to say, “Yes, this journey is so very tough. Yes, the battle often seems relentless. No, we can’t be sure what the future will bring or how we will ever endure the storm, but we can fight this together.”

Together we can dig deeper to find the strength to endure.

Together, we can navigate the ups and downs of life so that on the days I feel like I am falling back into despair, someone will grab my hand, offering empathy, love, compassion, and strength. Tomorrow might be my day to reach out a hand and pull you back up. Together, we can conquer the shame of invisible illness.

Life is always better when we face it together.

Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble…A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken. (Ecclesiastes 4:9-10, 12) 

First published at beckyhillblog.com, April 2017. Adapted and published with permission.