There is this concept of the ‘look of the Other’. The idea is that when you are aware you are being observed you change how you behave. In some cases preventing someone from doing a crime in other cases simply curbing your freedom to express yourself, so you are not seen as silly or childish. In a sense, it robs you of your inner-self. The self you would express if the Other were not there to objectify you. Dance like no one is looking, eh?
We develop our facade of well-being for others. To mask the pain in public. Because we have to function in it, we have to fit into it. In a way, it silences our pain for the sake of society. And of course, what cannot be seen can then be doubted.
For those of us who are chronically ill, there is always this feeling if we mention anything, serious or self-mocking, about our illness people don’t want to hear it. They are tired of hearing it, they think we are chronic complainers, they think since we are not screaming we are not really suffering, they think we are lazy or they simply do not care one way or the other. I loathe that disinterest. It makes it seem like this constant war, the handful of medications, the dozens of symptoms and/or side-effects, that all-consuming fatigue and all that pain is worth nothing, not even mentioning.
And yet when we are silent. Oh, when we are silent, then our pain is doubted altogether.
It isn’t that we seek out pity or sympathy. Instead, I find reasons and cling to them desperately so this all is worthwhile because let’s face it when we are alone and we ponder it all we need all the reasons we can make up to continue. All that disinterest makes a person wonder if it is worthwhile after all. All the struggle. The battle. I don’t know what I expect from people and frankly, I think I should expect nothing at all. The point is, being aware of the Look from Others whether that is a loved one, a friend, or co-workers inhibits our openness about our condition. Makes our hard earned success not worth mentioning at all, like all that effort is seen as easy or simple. When the battle behind the scenes to achieve what we do is insane. Incomprehensible to others.
We become disinclined to mention anything about how we are coping to anyone. So while general indifference to our pain rather sucks when we are trying so damn hard to do what we are doing while not showing any outward sign of the toll it takes. What is worse than that is it encourages our silence which then simply encourages others to believe for some reason our chronic illness mysteriously vanished simply because we do not look like we are suffering or mention it in any way. That there silence is extremely dangerous.
Yet when I see that look in peoples eyes I simply want to stop. Stop talking, stop laughing and just get through it so I can get home and forget about it all for a few hours until I have to go through it all again. And I love to laugh, it is the only coping mechanism that actually helps me lie to myself better. There is not much to be done about it though. No point in expecting things from others, since the strength to endure comes from within. Sometimes that damned silence feels like it is choking me.
I know exactly how dangerous it is because I am damned good about lying to others, living with that facade of well-being, so firmly established no one can tell I am getting worse until it affects my ability to function altogether. That I feel it is necessary to do so is because I know all about those Looks from Others that compels me to pretend all is fine, or good enough. It sucks that we are encouraged to suffer in silence and it sucks that Others make us feel that it is in fact necessary. I would hate to be perceived as a chronic complainer, and yet, I know sometimes I likely am seen as such. The irony of that is I may mention a bad migraine, or some of the more annoying symptoms, but only when they are bad and I never mention mild to moderate migraines and I most definitely do not mention anything to do with FMS pain. If I mentioned all that fun I most definitely would be a chronic complainer, even if it would be an accurate description of my health in the moment. And, damn, wouldn’t that be depressing to list all that off. No thank you. I know people do not care about the minutia, so I keep all that to myself, but yeah, when it is bad, I do mention it.
It is my battle. And mine alone. It isn’t for them to know. It isn’t for them to understand or comprehend. I know that. And it shouldn’t be for them to judge either, but oh, they do. But, man, how society wants to just make us silent. How they just want us to fit in. How they then doubt we even suffer at all.
It just makes me aware of how vital health forums, blogs, and support groups really are. It is not just that we know we are not alone, or that others can have helpful pointers it is also that we can complain about some simple aspect of our health that made the day difficult or a simple success that made the day awesome without having to endure that Look. It is such a relief to be able to do so.