Last week I was a Patient Partner at the three-day 2018 conference (annual scientific meeting) of the Canadian Pain Society (CPS). On Twitter and Instagram, it was #CanadianPain18.
I was also part of the conference’s official Twitter team, live-tweeting the event from a patient perspective. My rare disease is Complex Regional Pain Syndrome (CRPS), often still called Reflex Sympathetic Dystrophy (RSD; its old name). One of its many symptoms is high-level neuropathic pain; nerve pain.
During the conference, I kept hearing presenters – world-class pain specialists – talking about something called “pain catastrophizing”. Each time this term came up, many of the other Patient Partners in the audience – as well as patients following along on Twitter – would react with indignation.
I’d never heard the term before, so I did what anyone with a smartphone and WiFi would do; I Googled the phrase! And was then appalled by what I read.
This is the first thing that came up, for “pain catastrophizing”:
This definition (and the graphic novel – or comic book – style image) is from Practical Pain Management, a medical journal “Written and reviewed by pain experts and leaders in the field”(1):
Gatchel et al define pain catastrophizing as an exaggerated negative orientation toward actual or anticipated pain experiences; current conceptualizations most often describe it in terms of appraisal or as a set of maladaptive beliefs” (2)
So. This is a medical journal, for chronic pain specialists, and the image they chose to help explain this term is… a cartoonish image of a woman. Who’s clearly meant to represent the “exaggerated negative” outlook mentioned in their definition.
I suddenly and very clearly understood the outrage I’d been sensing, from other patients, each time the phrase “pain catastrophizing” was used.
This is not me; this is not we: This doesn’t represent any of the many chronic pain patients I’ve met and connected with on my own patient journey. Nor in my career spent working in healthcare.
What the selected image does represent, unfortunately, seems to be the outdated – and highly sexist – view that chronic pain ‘is all in a woman’s head’. The idea that women’s symptoms, particularly pain, fall under the Victorian category of ‘hysteria’:
I’ve started to think of hysteria as a kind of cockroach of an idea: not really evolving, keeping just out of sight, frighteningly tenacious.
Given how long it has persisted in the history of humankind…”(3)
What exactly is “hysteria”? That’s a great question, and the Office for Science and Society at McGill University here in Montreal recently provided an excellent answer to it:
Hysteria was basically the medical explanation for ‘everything that men found mysterious or unmanageable in women’, a conclusion only supported by men’s (historic and continuing) dominance over medicine, and hysteria’s continued use as a synonym for “over-emotional” or “deranged.”
It’s also worth noting how many of the problems physicians were attempting to fix in female patients were not problems when they presented in male patients.
Gendered stereotypes, like the ideas that women should be submissive, even-tempered, and sexually inhibited, have caused tremendous damage throughout history (and continue to do so today).
It doesn’t seem so coincidental then that most modern treatments for hysteria involved regular (marital) sex, marriage or pregnancy and childbirth, all ‘proper’ activities for a ‘proper’ woman.” (4)
From my patient perspective, supported by my background in biomedical ethics (bioethics), it’s long past time to retire this outlandish view of chronic pain as being somehow related outdated concepts of “female hysteria”.
How do we do that? Maybe it’s time to consider renaming “pain catastrophizing” to a term with fewer negative connotations. Research published earlier this year was:
the first study to suggest shared genetic factors in the observed association between pain catastrophizing and negative affect (i.e., anxiety sensitivity and fear of pain).
In addition, we provide further evidence for a genetic basis for pain catastrophizing and, for the first time, its three subdomains rumination, helplessness, and magnification.
Our findings provide new insights into the aetiology of pain catastrophizing and its relationship with other measures of negative affect and personality.
Pain catastrophizing remains one of the most important psychological predictors of pain intensity, disability and treatment outcomes across a range of musculoskeletal and rheumatological conditions.
Every effort should be made to better understand the factors contributing to its development and how best to address it clinically.” (5)
With genetic factors involved, could we not find a better term than “pain catastrophizing”? One which would account for these new findings? A phrase that carries less risk of stigmatizing patients, particularly when used outside of specialized pain management and pain research centres; wielded like a weapon against patients by healthcare professionals who don’t have a profound understanding of the origins of the current terminology.
Other terms in medicine and healthcare have been successfully changed over the years, as new knowledge has became available. As noted above, even my own disease has been renamed on many occasions over the past hundred years or so.
It’s also time to replace this sexist cartoonish imagery of female chronic pain with real women, living with high-level and constant pain. Women caregiving, studying, working, and doing all the things that need to get done. All while living in pain.
Reducing patients to cartoon characters, as was done by Practical Pain Management (2), risks further alienating and stigmatizing women – and others – and preventing them from seeking and receiving appropriate pain management and healthcare.
So the next time you hear the phrase “pain catastrophizing” used in a negative or pejorative manner, of by someone who doesn’t fully understand the term, call it out. Speak up. If you see inappropriate imagery for “pain catastrophizing”, say something. Ask that it be replaced.
Until we have improved terminology for the complex concepts inherent in “pain catastrophizing”, the best that we can do is to try to prevent it being used in harmful ways; those which encourage the dismissal and disrespect of patients’ pain reports – of patients as people.
Hopefully we’ll soon be able, together, to kill off the cockroach of a concept of “female hysteria”. And the misguided and harmful view that “pain catastrophizing” is simply another way to say “hysteria”.
References
(1) Practical Pain Management; Vertical Health LLC. About Practical Pain Management: Your Trusted Source for Information about Chronic Pain. Online, accessed 30 May 2018:
https://www.practicalpainmanagement.com/about
(2) Gatchel, Robert J. and Neblett, Randy. Pain Catastrophizing: What Clinicians Need to Know. Practical Pain Management; Vertical Health LLC. Vol 15 ; 6. 12 Apr 2017. Online, accessed 24 May 2018:
https://www.practicalpainmanagement.com/pain/other/co-morbidities/pain-catastrophizing-what-clinicians-need-know
(3) Bryn Rundle, Lisa. I broke my back but hid the pain; how the notion of hysteria lives on. Chatelaine. 07 Feb 2017. Online, accessed 30 May 2018:
https://www.google.ca/amp/s/www.chatelaine.com/health/women-pain-hysteria/amp/
(4) McVean, Ada. The History of Hysteria. McGill University; Office for Science and Society (OSS). Website. 31 Jul 2017. Online, accessed 30 May 2018:
https://www.mcgill.ca/oss/article/history-quackery/history-hysteria
(5) Burri A, Ogata S, Rice D, Williams F. Pain catastrophizing, neuroticism, fear of pain, and anxiety: Defining the genetic and environmental factors in a sample of female twins. PLoS One. 2018 Mar 22;13(3):e0194562. doi: 10.1371/journal.pone.0194562. PMID: 29566063; PMCID: PMC5864012. Online, accessed 30 May 2018:
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0194562#ack