An interesting topic was brought up at the pain clinic class today. We were talking about pain behaviors. He wanted us to think about our pain behaviors and how they are perceived by others.
I have always been of the opinion that with chronic pain, well, it dampens our pain behaviors. First of all, we are not as free to express them as are people with acute temporary pain, where it is perfectly acceptable to moan, groan, cry or otherwise exhibit pain behaviors while you recuperate. And people have genuine sympathy for that. Not so much with chronic pain. People get a little tired of that and we learn to muffle them pretty good.
Yet, as we discussed in this class, that certainly does not mean we do not have pain behaviors. We just change them. Pain is represented by new signals. Signals our loved ones, co-workers and friends can usually pick up pretty well. Not all the time if we do not verbally express it, but more than we might realize.
I have often been called stoic by doctors and ER doctors. It is their favorite term for me. And it always surprises me when they say it because pain is very familiar to me. I don’t express it the way they expect. Doesn’t mean I do not have ways that it is seen, just not ways that are familiar to them. It causes a bit of a disconnect in those situations; from the pain, I am feeling to the pain I am expressing. Yet when I thought about it for just a few moments I could easily come up with some recognizable signs of my pain:
Silence: I get very quiet the more pain I am in. No laughter or chatter. Just necessary words. And it is very noticeable to people who know me. (how this can be misinterpreted? As anger, because when I am pissed I also get very quiet. I don’t like to say things I cannot take back and prefer not to say anything in anger. And I have had my spouse occasionally confused as to which this is. Anger is rare for me and I can only assume the times he is confused are the times when he thinks I have a reason to be angry! However, strangers might think I am just a quiet person. A friend of mine once thought I was angry at her and I had to explain that, no, of course not… it was just the pain. I just internalize the pain and pay less attention to my environment and can focus less on communication. It is just how I deal.)
Grabbing and holding my neck: I have a lot of neck pain and if I am sitting it feels better to grab and hold the muscle in the back to relieve some of the pain. Sometimes massage it a bit. (This I believe could be misinterpreted by someone who does not know me as general muscle tension or irritation.)
Wearing sunglasses all the time and inside: I have a lot of photophobia. More so with a migraine but also without a migraine. So sunglasses are a pretty obvious sign of them. (This I have actually gotten looks for. I can assume they may think I am hungover or stoned.)
Those were the ones that just jumped out at me. But there are so many more. I have a lot of foot pain so when I get up those first few steps are ‘careful’… and that is a noticeable pain behavior. Vertigo behaviors that are not pain behaviors… like staggering and falling and I do wonder if people think I am drunk. One obvious tell for someone with FM is how we reposition ourselves all the time because we cannot sit in one position for too long without considerable pain (makes a person look uncomfortable or nervous), then when we Do sit in one position for too long for whatever reason as soon as we move we might groan, wince, or move really stiffly (all obvious tells of pain).
So we have them. We all have them. More than we might like to believe. As ‘stoic’ as I am it didn’t take me long to think of some pretty clear pain tells. Pretty clear migraine ones as well.
He said to pay attention them and how they may be perceived by others because you may want to do something about that perception. With strangers, not likely. Does one really care about a fleeting opinion? Not really. But we do for most other people in our lives. Sometimes clarity of communication is important.
He also made the distinction between explaining vs. complaining. I think this is pretty important when it comes to pain. I found a long time ago I communicate less about my pain because I hate the perception of being a chronic complainer, which you feel like when you talk about it. When I so discuss it I tend to go into explaining mode because it feels less uncomfortable to me. To be honest, I don’t much like it either since it feels like I ‘talk’ about it too much. But I prefer to try to establish some sort of understanding. Or saying this is why I do this. For example, I once told someone the reason I preferred not to wear dresses and skirts is that in order to feel comfortable with FM I need to switch positions with my legs every few minutes and it limits the positions I have to choose from, thus makes it pretty painful pretty quickly. I explained this because I was wearing a dress at the time… and regretting that choice. I explained only because the person noticed my pain. Again, the pain was perceived due to my having increased it so rapidly and thus having troubles getting up and rather than complaining about it, I offered an explanation. It is always nice when we encounter someone who ‘gets’ us but most of the world will likely not understand this chronic pain we live with. As I have often said we have the option to reveal aspects of it or conceal them. We do naturally conceal a lot, but we reveal more than we realize. We can choose if needed to explain to people why they perceive certain actions. The need to get up and stretch. The need to wear sunglasses. Whatever it is.