We all know that pain is variable. I am at a 7 and this is unpleasant. I am actually not able to do much of anything at this point and am trying to distract myself. Other times my pain is more tolerable and then… I do a thing. I, of course, don’t do several things because I have to pace myself but I do a moderate activity, a few minor activities or I go socialize.
Most people wouldn’t assume this means my pain poofed out of existence. In what world would this even be the case? It is absurd to think that. And yet… that is the discrimination we get sometimes.
Well, you did that Thing yesterday why can’t you today?
I’m going to go out on a limb here and say yesterday my pain was less or I pushed myself. For example on a work day, I’ll push myself because the next day, in theory, is my recovery day. Mostly though high pain means I’m doing nothing but self-care and moderate pain means doing very little and low pain means I can pace myself. That there is called the chronic pain lifestyle.
I see you left the house you must be ‘improved’ or ‘better’
I can even see where this one comes from. We are often hermits and isolated. When we leave the cave it is an event indeed. It seems to imply that we are vastly improved. It can mean it is a good day. Or we feel there is a family obligation. Or that we are aware that socializing is in fact mentally and emotionally good for us… and we damn well need some interaction with some human beings. But we may feel pretty cruddy. We may have to leave the house for doctor appointments or errands and really, really not feel up to it in the least bit. May very well be the last thing we want to do. We may be starting a slow exercise of walking which gets us moving and outdoors, but by no means is this easy.
I began getting out and about more often simply because I was aware that it was better to get some socialization mentally. Better for my spouse too. But it said absolutely nothing about my pain levels. It implied so to my insurance company though, but then they are a special little case, are they not? Always looking for their little reasons. Nevertheless, chronic pain is there, and we can still choose to live a life… carefully and in small doses.
I see you are smiling you must be feeling better or not in pain
This one is very common. People expect pain behaviors. When I exhibit pain behaviors at work, which I do when the pain is a high 8 or 9… I just cannot seem to hide it completely at that point, then people will comment on it. Otherwise, they forget I have chronic, daily migraines. As in, there, daily. And work is a struggle. Not that I expect sympathy, but it illustrates that a smile hides a vast amount of pain. As does a laugh. People simply cannot see past it. Not only that but they cannot Fathom it, they cannot Believe it. You can express your pain verbally or say you have chronic daily pain that is pretty significant, but if you are not expressing it in a way that is meaningful to them they don’t quite believe it is as serious as you let on. This isn’t the case for everyone of course. You can usually decipher the ones with the ‘look of disbelief’.
I actually generally do not believe it matters if people doubt my pain in general. I simply do not need their validation. My pain exists with or without their belief. I have to cope with it with or without them. What is a factor is Who believes and doubts. In my case my loved ones and family to understand my pain, pain’s variability, and my limitations. This is very important. When loved ones and family do not this is extremely stressful and difficult to cope with. Co-workers and employers one would hope would understand on some limited basis, because to some extent disabilities affect the workplace as does workplace discrimination. So that can easily be a massive issue. It certainly was with me in the past. Currently, it is just a complication. A lack of knowledge and comprehension that doesn’t seem to be an issue. What is always important to me is my employer is understanding of my difficulties and I can never be sure of that until issues arise, but so far it seems to be quite sufficient. With friendships, it can also be an issue that arises. We have all lost friendships due to illness I suspect.
Also see: Not miserable? You must not be in pain