‘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 whither.” – Brene Brown

Over the summer I read Brene Brown’s fabulous book ‘Daring Greatly’. The book follows on from her famous TEDTalk on vulnerability that had previously inspired me to write this blog post on the power of vulnerability.

The full title of the book is ‘Daring Greatly: How the courage to be vulnerable transforms the way we live, love, parent and lead.’ It encourages us to dare to be honest about who we really are, rather than trying to hide our weakness. It teaches that vulnerability helps us to live more ‘wholeheartedly’, connect more with others and that it helps us to overcome the destructive burden of ‘shame’ we all carry.

Her book really got me thinking about this concept of shame. 
It is not something we often think about.

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

And yet, this book caused me to really reflect on shame; what it is and what it really means. It inspired me to consider these questions;

Where does shame have a hold on my life?
How does shame effect my thoughts and actions?
How might shame be damaging my wellbeing & relationships?

What is shame?

Words we often connect or use interchangeably with shame are words like: embarrassed or humiliated. It can manifest as feelings of inadequacy, guilt or regret. It’s something we often hide and cover up. We might self medicate to avoid thinking about it. We dread people seeing it.

And yet although shame is often seen as one and the same as guilt, I have come to see that there is a distinctive difference.

One of the main differences between shame & guilt is that guilt is the feeling of embarrassment or regret about something YOU HAVE DONE WRONG. We can feel shame, on the other hand, even when we have NOT DONE ANYTHING WRONG.

Shame is more connected to who WE ARE and how OTHERS PERCEIVE US.

“It’s a painful feeling about how we appear to others (and to ourselves) and doesn’t necessarily depend on our having done anything.” – Joseph Burgo

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 see how shame had got a hold on me and particularly how it has effected me over the past year or so.

Finally I began to see and recognise that;

I FEEL ASHAMED THAT I AM 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.
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.

I feel embarrassed to be sick!

When I decided to speak up and write about feeling ashamed of being ill, it led me to google the words; ‘the shame of chronic illness.’ Through that search I found two insightful blog posts by a lady called Angelika Byczkowski in which she shares something of her battles with the chronic connective tissue disorder – Ehlers-Danlos syndrome (EDS).

She writes so beautifully about the humbling journey those with chronic illness and pain are forced to take;

“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 catch myself thinking, “If you’re so smart, why did you let this happen to you?”

Those words were so revealing to my own heart. I have begun to see that I feel like a ‘failure’ for being sick. I feel like – ‘if I was only a bit stronger or wiser, made better choices, if only a bit more positive, if only I had more faith …. surely I could have overcome this sooner?’

Such thoughts often taunt me and drag me into a dark and negative pattern, which was particularly bad at Christmas, where I blame myself and feel responsible for still being ill.

It’s so humiliating to be so unwell and in pain long term.

Angelica highlights this so beautifully in another post called ‘The subtle arrogance of good health’. She writes about how many of us have fallen for the trap we set ourselves, because before we got ill we carried a form of arrogance at being healthy .

“My attitude was the typical thoughtless “arrogance of good health,” the attitude of those who can’t even imagine what happens when a body stops functioning properly. This arrogance knows only the kind of pain that heals, the kind of sickness that is cured.”

As I read those words I too knew it was talking about me. Before I got ill, I had carried the ‘arrogance of good health.’ I had believed that I was strong enough to shake it off when others couldn’t, because that was all I knew.

I was not the ‘type’ who would succumb to its chains. I was always so healthy and surely I could overcome anything thrown at me right? Surely my faith and positive mindset would win?

And then one day in January 2015 I fell off a step ladder and entered the world of chronic invisible illness and pain. I acquired a debilitating spinal CSF leak and brain injury that I haven’t YET overcome. I have been unwell for 20 months. Each and everyday I battle through chronic pain, physical & mental fatigue, a foggy brain, barriers to treatment and the challenges of not ‘being able’ to heal up, get well and get free.

And honestly,
I feel ashamed on so many levels!!

I feel ashamed that I have now become one of those people with ‘chronic pain’ and ‘chronic illness.’

I actually hate using the word ‘chronic’ at all! (Which is revealing of the sterotypes I 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 and 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 and with nothing left for the fight, and 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 really 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 where I am at, and that I have to tell them I am still not well, it’s got worse and it is not yet over.

I feel ashamed when I can’t tell you that I have finished the fight, overcome, won and beaten this dreadful condition.

I feel ashamed that I cannot yet testify to the fact that I am now 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;” Psalms‬ ‭25:2‬ – The Bible

I feel ashamed telling doctors that I can’t seem to get better and hope that they will see past the ‘chronic pain’ patient with the unusual condition and know that it’s not ‘all in my head’ so that 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 me and making 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!

So today I am making the ‘unspeakable’ speakable; for myself and the multitudes who also travel the dark road of chronic illness and pain.

I am speaking out my shame so that it can no longer chain me up with its lies. I am choosing to acknowledge the space it has taken up in my thoughts; so that we can tear down its strongholds together.

Today I chose vulnerability; to speak the unspoken, so that you and I won’t have to suffer again 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, do, and my 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 that perhaps we also once secretly adhered to ourselves, and no longer allow it’s 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 whither.” – Brene Brown

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What do you feel ashamed of? We all carry shame in some form. Please feel free to comment below – if we can speak it then perhaps together we can beat it!

UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. To read more about the new diagnosis please see this link.

Here is my new summary video of my whole medical journey https://youtu.be/cKECz_fCnFw as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow

I have now written a follow up post to this one titled ‘Grapping With The Shame Having A Rare Invisible Illness‘.

For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Here is the link again to Dr Carroll’s video.