Chronic pain: an unrecognised taboo

On the whole, talking about the chronic pain I experience tends to be greeted with a resounding silence, and/or rapid change of the subject.

If you’d asked me ten years ago to name taboos in the UK, I’d have said things like ‘female masturbation’ and ‘being transgender’. Twenty years ago, I might have said ‘being homosexual’. Particularly in some circles, these things are still somewhat taboo, but much less than they were. Now I’d include chronic pain, but only because I live with it. If you don’t, you’re probably happily oblivious of the awkwardness around the topic.

The Cambridge UK dictionary defines ‘a taboo’ as ‘an action or word that is avoided for religious or social reasons’. Having suffered from chronic pain for several years now, I’ve only gradually become aware of how often I refrain from mentioning pain, and why. On the whole, talking about the chronic pain I experience tends to be greeted with a resounding silence, and/or rapid change of the subject. No doubt this is why I often avoid mentioning it, or mention it briefly and rapidly change the subject myself.

unsplash-jules-fuchy-man-alone-dark-sky
Living with chronic pain can be a lonely experience when it’s hard to talk about it.

Why the awkwardness?

Are people awkward about chronic pain because they don’t know what to say, like when someone’s parent has died? Or is it because they think you shouldn’t mention it; you should be pretending everything is fine? Hard to know really. Here are my thoughts on possible reasons why people react strangely to talk of pain:

  • Chronic pain, like death, old age and hospitals, is something most people prefer to ignore until forced to confront it. Discussion of these topics causes a sense of unease that people want to avoid.
  • People want to ‘save’ those with chronic pain from talking about something that seems very personal, so strive to change the topic.
  • People are worried about either sounding pitying or heartless, so say nothing or change the subject.
  • Actually, people are only a little awkward but the chronic pain sufferer is expecting awkwardness and that magnifies it in his/her mind.

There’s always the worry that silence means something negative like ‘you need to man up’, especially after actually receiving some rude and inconsiderate comments along these lines in the past.

Then there are other reasons why people with chronic pain don’t talk about it:

  • Fear of sounding like you’re complaining and fishing for sympathy.
  • The complexity of the subject, which can only really be covered fully by a long conversation.
  • Fear of sounding ‘soft’.

This article sums up brilliantly the many reasons why revealing a chronic pain condition can make a person feel very vulnerable: it can feel like you are in a no-win situation. But the less you say (or are able to say, before the topic is changed!), the more likely people are to jump to the wrong conclusions. The more you can explain, the more people are likely to gain understanding.

Why we all need to help end this taboo

The trouble with any taboo is that it creates repression and shame. People feel abnormal and are unable to obtain the benefits of discussing something important to them, such as compassion, getting useful suggestions, and that feeling of carrying a lighter load. And the subject of the taboo remains poorly understood, shrouded by prejudices. Estimates of those living with chronic pain vary, but it is undoubtable that the percentage is high: about 7.9 million people in the UK experience moderately or severely limiting chronic pain (between 10.4% and 14.3%) [1]. How many people do you know with chronic pain? Does it match these statistics? If it doesn’t, then maybe you know some people who are living in the silence of this taboo.

back-pain-pixabay
If chronic pain were visible, perhaps life would be easier for those living with it…

We Brits are well-known for a ‘grin and bear it’ attitude and for euphemisms. We say things like ‘things have been better’, when really we mean ‘things are terrible’. Is this helpful when it comes to chronic pain? Well, there’s certainly a need for much ‘patient endurance’, as chronic illness writer Toni Bernhard puts it. And sometimes we do smile, in spite of the pain, and we must. But we shouldn’t feel pressurised to pretend everything is fine if we feel unhappy. We shouldn’t feel unable to set boundaries, to pace ourselves, and to use mobility aids or other aids which ease our burden. Most importantly, we should feel ok about sharing this struggle, this massive part of who we are.

And with 69% of those with the severest level of pain experiencing anxiety or depression [2], improving the social conditions faced by these people should be a high priority. Feeling that pain is taboo isn’t going to lift anyone’s mood – quite the opposite.

hailey-keen-unsplash-woman-on-floor-in-agony
69% of those with the most severe pain experience anxiety and depression, which could be reduced if there were sympathetic listeners on hand!

How can we get there? If you live with chronic pain, try to start sharing when you can. And if you don’t live with chronic pain, be ready to listen, to show some sympathy, and to discuss this issue which has been pushed into the shadows for far too long.

I’ve started talking more about pain, talking about it whenever a good opportunity arises. I’ve started resisting the urge to not talk about it. And you know what? It feels good. It feels a bit revolutionary. It feels like being myself and like opening the door of understanding, even if merely by an inch.

Related links:

http://sufferingthesilence.com/#sthash.QJKIOsPo.dpbs

http://blog.allsup.com/2014/09/nfmcpa-stigma-persists-for-people-with-fibromyalgia-chronic-pain-conditions/

http://www.dailymail.co.uk/femail/article-3204061/Young-people-invisible-chronic-illnesses-like-HIV-Lupus-reveal-conditions-world-new-portrait-series-prove-don-t-suffer-silence-shame.html

https://wordpress.com/read/blogs/120574110/posts/996 a personal description of the advantages of telling people about a health condition

https://wordpress.com/read/blogs/67332141/posts/796   on the stigma of autism

https://wordpress.com/read/blogs/116356880/posts/220  on the stigma of mental health issues

Scholarly articles/research related to this topic:

http://anthropology.mit.edu/sites/default/files/documents/jackson_Stigma.pdf

http://etd.lsu.edu/docs/available/etd-11182013-152753/unrestricted/rlang.pdf

http://www.ncbi.nlm.nih.gov/pubmed/24548852

Other references to chronic pain as a taboo:

http://mikscarlet.com/the-last-taboo-pain-why-does-it-hurt-us-to-admit-to-it/

http://leeockenden.com/specialties/chronic-pain/

http://www.canadianpaincoalition.ca/media/chronic_pain_final_2.pdf

If you would like to suggest a related link, email me!

References

[1] Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies by A Fayaz, P Croft, R M Langford, L J Donaldson, G T Jones, http://bmjopen.bmj.com/content/6/6/e010364.full

[2] The Health and Social Care Information Centre, Sally Bridges, 2012 http://content.digital.nhs.uk/catalogue/PUB09300/HSE2011-Ch9-Chronic-Pain.pdf

 

 

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