By Cynthia Toussaint
In March I was honored to be invited to be the person with pain’s voice for a Stanford University Twitter chat that focused on pain psychology.
I’m very excited about pain psychology as an emerging therapy due to the mind-body connection as I believe our emotional state generally effects our pain levels and visa versa.
Several years ago, I benefited from numerous visits with a pain psychologist at the USC Pain Center. It was eye-opening to partner with a psychologist who chose to exclusively treat people with pain. This doctor helped me tremendously with my daily mindfulness meditation by using biofeedback where I got to watch myself amp or lessen my stress level. It was fascinating to feel my pain follow accordingly.
I was onboard with everything regarding the Twitter chat until a doctor asked what part “catastrophizing” plays in our pain experience. Upon seeing that word, my gut clinched. I immediately wanted to defend, not only me, but all women in pain. In my 14 years of pain advocacy, I’ve never heard a woman speak positively about this word. In fact, it’s quite the opposite.
As it’s been explained to me, catastrophizing is when we with pain assume the deepest, darkest, most negative outcome after a pain-spiking event. Psychologists theorize that when our mind goes to that black place, our bodies respond in step leading to a self-fulfilling prophesy.
While I believe the theory has merit, I can’t tell you how often we women in pain talk bitterly about this word because it makes us feel misunderstood. When we’re told we’re catastrophizing, we feel dismissed as if (yet again!) our doctors are blaming us for our pain.
Not only does the word damn us, I know first-hand catastrophizing can serve a valuable, self-preserving purpose. Here’s one example…
Five years ago a physical therapist wanted to try to straighten my severe, 20-year CRPS arm contracture. Everything in my gut told me not to do this. My fear was that the outcome of this treatment could lead to losing some or all of my right arm use… again! Hey, I was in my first in 27-year partial remission, swimming a mile, enjoying unlimited typing, writing and piano playing. Even throwing a football. What was so special about a straight arm anyway?
I finally agreed to let Brianna work on just my head and back as she said this would help unfold my arm. When she cheated and pulled on my contracted limb, I screamed bloody murder – and my life went back to uninterrupted torture.
I phoned Brianna two days later sobbing and desperate. She told me I had a muscle spasm and to meditate. When I saw her at my next appointment – even more desperate – Brianna released me from PT stating I had a “resolving elbow injury” and was catastrophizing.
The sad truth is Brianna had broken my arm. But because the doctors read her records about my catastrophizing, I went through hell without an accurate diagnosis for a year. At that point, my arm had healed incorrectly and it was too late for non-surgical treatment.
If my physical therapist and subsequent doctors believed my report of pain rather than thinking I was making a mountain out of a molehill, I wouldn’t be dictating this post.
On the Twitter chat, I answered the question with “People with pain respond very adversely to the word ‘catastrophizing.’ It makes them feel misunderstood.” I thought the clinicians would be all over me because none of them were questioning the term.
But they listened. One psychologist even asked what term we’d be more comfortable with. That deep care warmed my heart – and I told her I’d think on it. Perhaps “rational alarm”?
There’s no question we women in pain are impacted by our mind/body connection – and sometimes we get in the way of our wellness. But the term catastrophizing sounds condescending, alluding to us having no rational basis for our very rational fear. To quote Jon Kabat-Zinn, high-impact pain is 24/7 full catastrophe living. Sometimes it makes every damn bit of sense to think the worst.
Chronic pain, especially the high-impact variety, is complicated stuff. I embrace the compassionate psychologists who are earnest in making a better day for those of us challenged with this life-altering disease.
Women (and men) in pain, let’s work together with our pain psychologists to find middle ground. I believe without a doubt that unlocking the mind/body mystery is a huge piece of our better wellness puzzle. But we must feel respected in the process.
Editor’s Note- Cynthia Toussaint is a frequent contributor to the National Pain Report. She founded the non-profit For Grace which is devoted to raising awareness for women in pain.