If you haven’t heard, Nicole Coffey has been doing a deep dive into pain science with Neil Pearson, a physiotherapist who is an internationally recognized expert is pain science. And let me tell you: Nicole has thoughts about how we treat people in pain. Buckle up for this one!
I need to rant: It should not be the responsibility for a person in pain to have to convince anybody that they are, indeed, in pain.
When did we stop believing people? When did someone saying “that hurts” not become enough for us? How do we expect people to prove that they are in pain? How miserable do they have to be before we believe them? Do we sympathize more if the pain is more intense? How intense is “intense enough” to warrant treatment? What if they pain lasts a long time? Do we feel more sorry for them or less? Where is the distinction between “poor you, it really sucks, that’s been bothering you for a while” versus “It’s been going on forever, surely you should be over it by now”?
I wanted to write about this because as a physiotherapist I run into this issue so often. I see people in pain who have to convince others about the legitimacy of their pain. Sometimes it’s a skeptical family member, sometimes it’s a health professional, and sometimes it’s insurance companies. Insurers do not love paying for “invisible conditions” and because pain is hard to measure, clients do not have a lot of traditional or mainstream quantitative data to demonstrate evidence of their illness. People in pain often cannot point to an MRI or blood test results for an explanation of why they are no longer able to fully function in their lives the way so many other people with chronic health conditions can.
Measuring Pain
Why is it hard to measure acute (short term) and chronic (long term) pain? One factor is because the experience of pain often depends a lot on context. Two people can be exposed to the same painful stimulus and still have two very different experiences.
Let’s use a simple example of trying to hold your hand in a bucket of ice water for as long as possible. If one person said the pain was 5/10 and one person said their pain was 7/10, would we ever say that one person is correct while the other is wrong?
Pain is a unique experience, and it is impacted by a multitude of factors including:
previous experiences
social and emotional factors
sounds
visual information
and so much more
How much pain can be influenced by numerous factors is a huge topic which I will try to tackle another day, but for now can we suffice it to say that two different humans with different backgrounds, different beliefs, different amounts of stress, different amounts of anxiety, different physical abilities, different knowledge backgrounds (and so on and so forth) could very plausibly interpret any situation differently from each other.
Maybe one person takes ice baths every day and is used to extreme shocking cold, maybe one person has a history of severe frost bite and almost lost some fingers a few years ago so now they are extra cautious around cold. Maybe one person has calloused hands. Maybe one person had a huge fight with their spouse the night before and didn’t sleep well and is feeling irritable and upset. Maybe one person practices meditation and can separate out the emotions and panic that accompanies the feelings of cold more than the other participant.
Regardless of any of these things, would we ever say that their reported experience is wrong? Or could we maybe just trust the participant gave any honest answer about how much pain they experienced in that moment.
Maybe we could just believe them.
The Insurance Conundrum
Let me dive into the topic of insurance for a second. Because frequently when my clients are being told that they are lying, exaggerating, malingering, or whatever other term is thrown around, it’s often from the insurance adjustor who is giving justification for denying a claim or refusing to pay for treatment. I have witnessed too many times the panic and desperation people experience when dealing with insurance companies, especially when a claim is denied.
A claim being denied does several things:
It invalidates the person’s experience and insinuates that they are catastrophizing
it increases their mental load (they now have to appeal again and go see another doctor and another specialist hoping someone will believe them enough to fight for them)
it strains them financially beyond belief.
Too many people attempt to go back to work earlier than they are able because they can no longer afford to stay at home and seek treatment. Would they love to try a knee brace? Of course, but they can’t afford it. Would they love to see if dry needling helps their neck? Of course, but they have run out of benefits and can’t take time off work to come to a physio appointment.
To take it further, people often underestimate the social impacts on those who experience chronic pain are swept up battling their insurance trying to justify coverage. Again and again, clients are forced to absorb the responsibility of self advocating to the detriment to other aspects of their lives in order to justify their coverage or else they quickly run out of options.
Story Time
I remember so clearly a client of mine in tears because she had to transport herself downtown to see yet another doctor (for the third time, only to be told once again that nothing could be done for her, but it had been 6 months since her last specialist visit so it was mandatory that she go otherwise her benefits would be cut off). She was in so much pain and so exhausted from that unnecessary outing that she no longer had the capacity to attend a very important family event that night.
She was absolutely shattered. She wasn’t even angry, she was just defeated. She told her family that she was fine but she wouldn’t be able to make it because she was tired. She told them not to worry and go on with the celebration without her. She told them maybe she will see them the next time they are in the country. This is what she told her family. She said she was fine.
She wasn’t fine.
She was suffering not only from her physical pain but also the mental/emotional aspect of feeling as if she had disappointed her family, while she herself was disappointed because she had been so excited to see her loved ones.
I’m not a mental health professional but I really feel that being with her family and helping them celebrate would have been so good for her mental health, but instead once again “like a wounded cat that just wants to hide”, she was left alone in her “black pit of pain” (client’s words). This upsetting experience could have been avoided completely had she not mandated to expend every ounce of her energy going to that unnecessary doctor’s appointment.
I know the next thought of many people is…. But what if they are faking it? What if they just want time off work? Maybe it’s not as bad as they say it is. They seemed okay when I saw them for a coffee date?
I would answer that most people want to feel good. Most people want to work and exercise and spend time with their families. Most people want to decrease their amount of suffering. They probably used every ounce of their energy to show up for that coffee date you had, and it would naïve of you to assume that how they present themselves in one hour of the day is representative for the other 23 hours of the day let alone the rest of the week. Also, I don’t think you get to decide how they feel.
A Thought Experiment
Do an exercise with me and think about a time that you were in extreme pain. For me this was childbirth and when my appendix was about to rupture. Even in those extreme situations I had the benefit of knowing that my pain was temporary and would come to an end. Many people do not have that luxury. Could I have lived with that pain 24/7? Was I able to hold a logical conversation during those times? What words would I use to describe that pain to a friend or a healthcare professional to paint an accurate picture of that situation? If I had been experiencing the same amount of pain but I did not know the reason I was in pain, how unsettling would it feel knowing that that overwhelming pain could return at any time and last for any duration without warning?
How invalidating would it be for a random man to say “Meh, I don’t think childbirth is that bad, I think you’re exaggerating”? I would be infuriated that someone who never in a million years could experience what I had experienced felt entitled to bestow judgment on my recollection of events.
Taking it further, what if that random person’s opinion affected the outcome of an insurance claim and I lost coverage because someone who works at a company has decided it’s probably “not that bad”? How much would I resent this as I had to cancel my children’s extra-curricular activities because I could now no longer afford them? What effect would that have on my mental health? On my marriage? I very quickly realized that if I had chronic pain I too would be automatically labeled a “catastrophizer.”
So the next time you have lunch with someone who suffers with chronic pain and you leave thinking “they seem fine they had a great time” remember that:
you probably saw them on a good day
they used every ounce of energy to try to show up and be with you (be honoured)
if they do open up about some of their struggles and difficulties, please believe them that they are giving an accurate account of their lived experience.
Invalidating them does nothing helpful.
When in doubt be kind.
Rant over, thank you for listening.