One of the things about illness is that it seems unfair -especially if it involves pain or limitation. To some degree, I suspect we all give in to self-pity in the throes of the process; maybe it’s a coping mechanism: a world view that allows us center stage for a while, an excuse to treat ourselves to some unaccustomed luxury. And why not? It’s only a temporary aberration, limited not only in duration, but in magnitude as well. Tomorrow will undoubtedly be better – the flu will have diminished, the sprain begun to heal. Reality -Life- will peek around the corner and beckon us.
But suppose it’s not; suppose its the same -or worse? Suppose the pain and debility persist and we find ourselves powerless in the grip of something we cannot understand, let alone control? What then? What if you seek help and are told there’s nothing to be done, or that the treatment, even if successful, will come at a once-unacceptable price? At what point do you become someone else? Something else? At what point do you somehow become a victim –someone demeaned? Disempowered? At what point, in other words, do you give up? Assign blame -or assume guilt?
These are vexing questions to which I have no clever answers. But they are problems -dilemmas- that we all encounter as we travel through our days. Certainly the chronicity of pain is a problem in gynaecology. A problem in endometriosis in particular. Perhaps in some future blog I will discuss the condition more fully, but for now suffice it to say endometriosis has the potential for becoming a chronic source of on-going pain with treatment regimes that might include surgery and affect fertility. It is surrounded by myth and misinformation that adds to the burden; it has variable clinical presentations making diagnosis or even suspicion difficult. It can be over-diagnosed on the basis of inadequately investigated symptoms carrying with it the inevitable worry and concern about the future. It can be under-diagnosed leading to multiple unsuccessful treatments and distrust of the medical establishment and their lack of effective medication -a gold mine for alternative therapies.
All understandable I suppose, and yet treated or untreated, I have concerns for the person behind all this -the person experiencing the pain, the person who is experiencing this by herself, as we all must experience pain. I remember an ad in a medical journal years ago. It was an advertisement for a medication for endometriosis and it was a picture of a beautiful woman in an alluring nightie curled up in the fetal position on a rumpled bed. The caption read: “Trapped in her own body!” I was sufficiently disturbed by it to fire off a letter to the company. What it had assumed -indeed encouraged everyone to think- was that she was a victim, someone on whom a punishment, or at the very least an unfair condition, had been imposed.
Unfair? Of course it is unfair -but the word, the description, is inapplicable, really. Pain, diseases, injuries are not judgeable as fair or otherwise. Some are perhaps preventable, some avoidable, all undesirable but unfair..? I suppose I take issue more with the powerlessness of the woman implied in the ad, though. The message is to surrender, I think, like in one of those police shows where the criminal is surrounded with no chance of escape. For him, we are led to believe, the chances of anything he does that might result in his freedom are non-existent. He must give up, not only his freedom and perhaps how he would like to see his life unfold, but also hope.
The analogy is wearing thin here, for sure, but I’d like to think that hope is not what that woman in the ad has lost, that she does not think of herself as merely an undefended receptacle for pain, a defenseless body being assaulted and beaten on a bed somewhere. I’d like to think that she still sees herself as a person, a subject. Not an object: a thing acted upon, something incapable of acting on its own behalf -powerless. I realize that I say this from the safety of my own health, as an unexperiencing voyager upon the surface of someone else’s disease. And yet despite the distance imposed I can still feel the suffering, however dilute. I can still encourage her to take some control, if only of very little. Any control, any sense of being able to influence direction is important. Even if the outcome, the destination, is unknown, walking along a path wherever it leads, is better than staying lost. It is hope renewed. It is the first step to recovery.