Living with Heart

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Pain – living with but not suffering from

Pain – living with but not suffering from


The language we use is a powerful thing. The talk in our heads, the talk from our mouths, the talk from others. We all use language as a fundamental part of living and this constant chatter internally and externally takes up an immense space in our mind. When you have a complex health condition this language becomes even more important.

I’ve been thinking a lot about this lately and there are some words that I, personally, am not comfortable using.

The word ‘disabled’ is one of those words. It has such power behind it and such imagery. Even on my worst days – when I’m not fully able bodied or in a high level of pain – I will never use the word ‘disabled’. I have often heard people say they are disabled by their health condition and I feel strongly that this label can be harmful. It puts the focus on what you can’t do, what you can’t achieve because you are somehow ‘not’ able. I’m talking here about the emotional and psychological power of the word.

The word ‘suffer’ is another word that I actively stopped using many years ago. When asked about my Psoriatic Arthritis or Fibromyalgia I always say that “I live with PsA”. I never say “I suffer from PsA”. Again, this word conjures up images of immense burden, pain, trouble. As my condition is one that will be a part of me for always and forever I have made a conscious choice to live with it. By doing this I decide not to make it a burden or even attach any negative words to it. I make a choice to fully live with my condition. I’m not giving in. I’m facing reality with positive words – or at the very least neutral words.
I also don’t particularly like the word ‘chronic’ as it also implies burden and ongoing suffering.

Now, this is easier said than done. Actively changing the language and words we use can take constant vigilance until it becomes second nature. Or it might be a light bulb moment that totally changes your perspective.

For me, my lightbulb moment was a process. I started reading books on meditation and mindfulness. I started reading about the concept of ‘pain’. Our culture has a lot of negative associations that go along with ‘pain’. If you’ve got a headache – take a panadol. If you’ve got a cough – take some cough syrup. There can be no pain and if there is it is not good but see as bad.

But pain is simply your body sending messages to your brain about stimuli – your brain/mind then decides how to deal with them. For survival of the species there is an automatic ‘pain is bad’ response. What if you changed this response to ‘pain is neutral’? WOW! This concept has radically changed the way I think about pain and my PsA. I now embrace (Ok – well more like accept) that pain is part of my life now. I choose not to ‘suffer’ from the pain. I acknowledge it and move on.

Now, obviously, there is pain you should never ignore. If you have a new or sudden onset of pain then please see your doctor immediately. But for people with long term pain then this can be a helpful way to think about it.

My feeling of pain is present regardless of my activity. Whether it’s my spine, wrists, my holy shit left heel or my neck. I make a conscious and considered choice everyday to live around and with this pain.

I would love to hear your thoughts on pain and how you process all the stuff that goes with it?

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective. 


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