If you live with chronic pain, you may relate to the message conveyed by this image. I know I do.
The experience of having the severity of your pain doubted is not unique to people with chronic pain; it happens to people experiencing acute pain too. For example, people with acute back pain may be suspected of malingering and have to undergo tests to reproduce or aggravate their symptoms to prove they are not faking it.
Why does this happen? Some guesses:
- pain seems more suspect when there is no observable injury or illness
- pain may seem questionable when the people experiencing it also have periods where their pain is less or absent
- pain becomes dismissible when the cause of it, or its qualities, lie outside of the experience of others; they haven’t had it so they don’t “get” it
- the way the person in pain expresses their experience may not trigger empathy in others
Communicating about pain is complicated.
There are cultural norms that may define how those in pain are expected to express it – the “stiff upper lip” would be one example, dramatic screaming and writhing would be another.
If your personal way of communicating about your pain does not match the cultural norm, what you express may fail to invoke empathy, nevermind sympathy, in others. To them, you don’t appear to be in pain and non-verbal behaviours are always taken more seriously than what is said.
Some people who live with chronic pain will become less expressive about it over time as part of their adaptation process. Some people will maintain their level and style of expressiveness, and come to be viewed (and dismissed) by others as constant complainers. We know which of those groups most closely resembles us, but may not know how to compensate for it, so that those closest to us will believe us when we’re having high pain days.
There is no one-size-fits-all solution to this dilemma, but here are a few suggestions:
- have a discussion about pain with your loved ones on a low-pain day
- tell them you sometimes wonder if they believe how much pain you are in
- ask them what is triggering their doubt
- ask them what they would need to see/hear to change that
- if you have an emotional reaction to what they’re saying, share how you are feeling without blaming them
- consider having special words/phrases to use when your pain is at its worst such as “It’s a ‘5 alarm fire’ day” or “It’s a ‘DEFCON 1’ day”
The onus is on us to communicate about our pain in a way that is clear and understandable to others. Talking about pain with loved ones can be difficult because it is likely to bring up sensitive subjects, but the value of feeling understood when you are at your worst is beyond measure. Find your courage, have “the talk” – it will be worth it.