Grappling with the “Shame” of Having a Rare Invisible Illness

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

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 who are chronically ill carry shame from their difficult journey to be heard, supported and helped, or shame that we 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 still so exhausted by it, feeling like we’ve run marathon after being whacked in the 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.

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 any more.

Shame that we have to spend so much time in bed out of necessity, not relaxation.

And the shame can pile up.

upon shame
upon shame
upon shame.

I’ve found so much freedom from shame over the last year, though sometimes something new brings it back to the surface and it creeps up, attempting to sink it’s 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 in this new place, to dig deep and choose calmness, kindness, thankfulness, love and hope.

Which is not easy!

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

Today I am choosing 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.

Because 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, there is someone who will grab my hand offering empathy, love, compassion and strength. Tomorrow it might be my day to reach out a hand and pull you back up.

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

*This is used with permission, excerpted from a post first published on Becky’s blog on April 25, 2017.

UntitledBECKY HILL lives in Leicester, UK and is a wife to Matt, mum to two girls, and a pursuer of Christ. Becky and Matt love the local church and have been involved in pastoral ministry for many years. In January, 2015, Becky fell from a step ladder causing a debilitating cerebrospinal fluid leak, which means she has to spend much of her day lying flat.  Becky loves words and writes to connect, encourage, share her journey, and inspire others facing suffering, chronic illness and pain.

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Chronic Joy Ministry View All →

Radical hope. Compassionate change. Equipping those affected by chronic physical and mental illness through community and education rooted in Jesus Christ.

2 Comments Leave a comment

  1. Thank you for sharing this! It is so important to be there for each other, and to acknowledge the hidden shame that those of us with chronic illness often deal with. I have felt that shame too, and I know what a blessing it is to hear someone say, “I see you! You are not alone in this.” The Lord is so gracious to come alongside us! Blessings to you!

    Liked by 1 person

  2. Thank you for your encouragement Bettie! It’s true that we can only get free from shame when we see it for what it is and acknowledge it. That’s the first step. Hearing others speak out their shame first – can really help us to acknowledge our own. Recognising it and throwing it off is truly liberating!!


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