“Just as my pain belongs in a unique way only to me, so I am utterly alone with it. I cannot share it. I have no doubt about the reality of the pain experience, but I cannot tell anybody about that experience. I surmise that others have their own pain experience, even though I cannot perceive what they mean when they tell me about it. I am certain about the existence of their pain only in the sense that I am certain of my compassion for them. And yet, the deeper my compassion, the deeper is my certitude about the person’s utter loneliness in relation to his experience.” (Illich, 1976).
Amazing to think that pain as it was inflicted upon a person it then belongs to them, in spite of not wanting it to belong to me, it is mine to bear. And similar to how I cannot share the feeling of this pain I cannot put into words how it feels....I can summarize that I hurt really badly today, that I have a sharp pain from under my right ear coursing down to my collar bone, or that I've been to the washroom 4 times to have my food voluntarily leave me still undigested. I can state that I can feel the pain of cysts inside my pelvic region yet, these descriptions all fall short of fully convening how I feel. I think that there is a point where words fail me, just as my body has reached point of failing to digest the simplest foods. This is a special place to be, between a rock and a hard place. I cannot expect you to understand how I feel, or why it does not show all over my face, yet too often I make that mistake. I forget that others don't know, and I judge them based on what they do not know, for that I am always sorry. I say always because in fact it happens more often than I know. I get frustrated that an acquaintance is baffled by my healthy appearance because I go through so many untold battles. But, that is where my error lies. These battles are not untold because I cannot tell them but they are untold because words would fail me to accurately depict the feeling and gut wrenching that enriches these battles. Words can only convey so much meaning before they fail to depict everything and it would be akin to telling a tale in Chinese and black and white, the language would be foreign because the pain is foreign and the feeling would be black and white because they are feelings only one who has been there could possibly colour in.
These past few weeks I have been learning the difference of a couple words and their relation to chronic pain, in thinking that they may help someone else I thought I'd share my lesson with all of you. Often I will say, "I'm sorry I can't ________, because I'm in too much pain". Letting others know where your at is a good idea, saying I can't but continuing anyway makes me a liar. I don't want that, in order for others to know that "I can't" actually means "I can't", I have to rephrase my wording as "I'm sorry but I won't be able to do that today" and then actually push myself not to continue, because in the end I only hurt myself. This is challanging because with all this pain I feel that I fall short in so many other aspects of life that I push myself harder to do things that I previously say I can't do. I need to let myself suck it up and accept that I won't be able to do certain things some days. Because communication is very important in relationships in general, yet when dealing with chronic pain open and honest communication is more important than ever.
Relationships hard in normal everyday settings because we have unrealistic expectations of other people around us, with the kind of pain, fatigue, and other issues I deal with relationships have grown an extra language barrier. The language of pain is one few know and even less understand. I think that in order to have better communication with people who don't understand this language of mine, it is best to treat them like ESL learners. It would be wrong to hold poorly worded comments against a person who was learning english, and similarly it would be wrong to hold poorly worded comments against a person who doesn't understand my pain. We have misconceptions that when a comment is said it is meant the way it sounds, yet I feel most of the intended meaning is lost in translation. Comments like, "Oh I thought she was better", "Can't she do a simple job", or a personal favourite "But, You look fine", or...well, I digress. These comments translate to me as the person is judging me based on appearance and since I look great, it must mean that they don't believe me that my pain is what I say it is. It hurts, cause I feel like thier calling me a liar, or being mean. However, they aren't really....Really. at least I hope not. I mean I often feel hurt cause of these little comments that shouldn't matter, because in an ESL perspective they aren't being mean, they never intended the comment to translate like it did. They just made a poorly worded comment based on their lack of understand my language. So I breathe deeply and tell myself "they meant well" at least they took the time to show concern for the situation...that counts for something. I think if I spoke german with the tiny tiny vocabulary I know, surely I would say something very very wrong and would hope that the person I spoke it to would understand that I didn't know what I was saying and thus can not be held accountable, I didn't curse at them on purpose. I would hope that they would look past my words and try and see my well meaning heart, and surely an embarrassed face if they informed me of my transgression eek!
~ElysiaB
