Tag Archives: pain

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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Somebody Check My Brain?

Pain Specialist “You go to a therapist every week – you actually have enough to talk about every time!?”

Me “Yes” and trying to avoid being too sarcastic or dropping f bombs “ between you and me – this illness has f… screwed me up”

Before I talk about the stuff that goes with pain and all that jazz, I wanted to touch on something that has really helped, which is therapy.  Four years ago I would have refused any talking therapies – a private person and highly introverted, I was absolutely convinced that I would get better and move on, if I needed to re-train my brain, I’d do it with books thankyouverymuch.  So having my opinions completely changed about it shows how much it has helped.

Then my pain specialist, after exhausting every option several times over, said that the only thing left was counselling at the local pain clinic – and as a Good Patient, I went along with it. I had a brief initial consultation where I said that my pain strategy which was to push myself until I crumbled, to which she said ‘that sounds OK’.  I was then told that I could do to group therapy (which makes sense as it is more cost effective for the NHS), but for me? even if I could handle the length of the afternoon session (which is unlikely) as an introvert, INTJ and not exactly a people person, the whole thing would have me climbing the walls.  I abandoned my ‘good patient’ manners and said that I would rather wait the 18 month waiting list for a one to one session.

Less than a year later I was struggling with another illness and full of steroids and their side effects.  The pain was spiralling out of control despite an increase in medication, I could feel I was slipping into a depression and needed help before it took fully hold.  My options were to see the doctor and go on anti-depressants (which I had already tried and made me very sick) or find a counsellor and see if that could help.  I spoke to three therapists.  One was into alternative therapies (“Have you tried reiki?”), the other was religious and the last one was just right.

From the first session she seemed to understand that it wasn’t just the pain I was struggling with, but all the crap that goes with it  and the whole ‘pushing myself until I crumble’ attitude was not helping at all.  There was something else.  Something that was the hidden key that unlocked all the why’s.  I’m Highly Sensitive.  Now, this is an unfortunate term that conjures up whiney images of ‘delicate flowers’, but as a term it does what it says on the tin and is a real condition.  My brain works in a different way.  I feel more – smells, textures, sound, light, medication are all heightened for me. I am more intuitive and empathetic towards everything (which can cause anxiety) and perfectionistic – in short, sometimes the world is too damn much.  On the plus side you are more creative and it is not a surprise that so many artistic people are often HSP’s.  The stress I put on my body – to be in a career that didn’t fit me, among people that I couldn’t gel with, in an atmosphere that drained me, all added to the final melt down of my immune system.  It was amazing that I lasted that long without falling apart.  But more about High Sensitive People later.

Now, two years on, I am still going to therapy.  It’s a long term thing and I understand that, layers of behaviour need to be torn down and new ones built.  It isn’t all fluffy chats, it’s hard and demands that you work, for it to work; but it helps.  And until a new magic pill is made that will make the pain go away, it is all that I have.

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