Tag Archives: shame

The shame of having a chronic illness

I have been thinking about shame recently after watching the Brene Brown TED talks.  It was so insightful that it made me reassess everything and I have been doing my best to put some of her ideas into practice.  While talking with some other bloggers I realised that everyone with a chronic illness feels an element of shame.  You might not feel it all the time, but it is there, subtly colouring our perceptions of who we are.

by molly hahn @mollycules

See, I am a bit of a control freak.  As an adult, my perfectionism was a protective shell around me and since I have been sick I’ll be the first to admit that my perfectionism has got worse.  I am far more strict with myself than ever before and an element of that is not showing how bad the pain is.  I don’t want people to see that part of me for fear that they will reject me because of it.  I crave the luxury and dignity of looking normal, in spite of the pain – but that is a symptom.  When did I start feeling such shame for my situation?

Unravelling my memories, I found one of the roots of the problem.  It was 4 months into my illness and my employers had made it abundantly clear that I was “letting down the team” so even though I struggled to sit and was drugged up to my eyeballs, I agreed to come in to see how I coped.  By mid-morning it was just too much.  The pain of sitting and using a computer was so overwhelming that I could barely focus, let alone work.  Hoping that moving would help, I went into the break room and quickly realised that it wouldn’t.  I was literally stuck, every move was aggravating the pain.  It felt like it was engulfing me and I didn’t know what to do.  Frustrated, scared, in extraordinary pain and on the verge of panic; I cried.  This was the first and only time I had lost control at work.  Thankfully one of the Head Honchos saw me and said that I should go home.  Using every ounce of strength, I went back into the open plan office to collect my things, all the while attempting and failing, to pull myself together.  Everyone was staring at me.  A few of the employees had had shingles and all had made swift recoveries, so I don’t think that anyone truly appreciated how bad it was.  As I left, still being stared at, I felt an overwhelming sense of humiliation and failure.  My protective layer of control had gone and I had shown the reality of my illness; instead of compassion and kindness, they made me feel humiliated and ashamed, with the accusation of why wasn’t I better and how I was letting everyone down. 

10 years later and I am a different person with a far greater understanding of my illness and why it happened.  However, I understand how that incident had engrained those feelings of shame into me.  It fed the fear of what other people’s reaction would be towards me if I showed them how bad the pain was.  Yet, it’s not the pain of them turning their back on me or loss of a friendship that I feared, but the action itself; the feeling that they believe that I am less of a person because of what I have become.  Of course this is crap, I know that!  I have made new friends and they haven’t turned away from me, yet that early experience still haunts me.  This is a work in progress, as it won’t magically eradicate all feelings of shame, but I am throwing ink over that particular ghost and can start to heal and find peace.

If you haven’t seen them already, please visit Brene Brown’s TED talks

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