Guest Post By Virtue B.
All relationships carry baggage; relations with illness are no different. This is inevitable, of course, as there are histories on both sides, but this gets obscured. When the clinician introduces you to your illness, they do not discuss this important piece of the puzzle. No, disease appears ahistorical; illness no personality. And, so, you accept this medical condition into your home, you try to comfort it, ease its suffering and soon it becomes part of your family, part of who you are, part of your name. To many your actual name, your given name, then becomes secondary. This process is slow, it is tricky, until one day you realize that it is now just your illness and your doctor that speak at your appointments- all other personal traits and issues are superficial. Yes, you are now the third wheel of the medical relationship. But, this is not a new concept. Foucault most famously described such medical relations in his book The Birth of the Clinic (1963) and many other authors have explored similar themes since; however, I have found a disturbing lack of such discussion in writings related to diabetes.
In Shakespeare’s Hamlet, there is a scene where Hamlet, with skull raised in hand, delivers the soliloquy “To be or not to be…” Though I memorized the speech for grade 11 English, I do not remember much of the words and, to me, they are unimportant. The skull, however, the skull was personal. It is a momento mori, or “an object serving as reminder of death and mortality” and the reason it struck me so hard is that I have come to realize diabetes as a sort of permanent momento mori. The effects of this morbid reminder are twofold—it can make you appreciate life, but it can also drag you down, and often times I think it does both simultaneously. Unfortunately, unlike an object-based momento mori, one imbedded in your entire being is not something from which you can look away, leave in another room or forget about. You can try, but the effects, the complications that arise from ignoring your diabetes can be just as devastating. However, no one discusses such issues in these terms in research and, many times, in practice. These grey areas of overburden do not exist– you are merely part of a binary, compliant or non-compliant; and in terms of spaces of sadness– the only talk I see treats the pairing of chronic illness and depression like some great mystery, or worse, some double genetic flaw.
But even this speaks as if diabetes is the only identity to which people have relations; in reality, who we are is more complex that any one personal dimension. This is true in that we carry multiple relationships with a multitude of people in our past and present lives; but also, we all carry social relationships of race, gender, sexual-orientation, ability and so on and so forth. Perhaps it seems to some that those latter issues are irrelevant, but I think it grossly erroneous to assume that these selves do not integrate with sites of medicine and illness. I can only speak for myself here, so I give you my case in point: I can say most definitely that being a woman affects my diabetes and my healthcare. Experienced gender-based violence plays into my daily decisions as much as diabetes and many times they act on one another. Generally, there is a power imbalance inherent in physician-patient relationships that awkwardly reminds me of past hurts; secretly I cringe every time I enter an ER and find my doctor is male; medical tests are rarely done by technicians that are prepared to know anything about you, and when they carelessly poke at me like I am the cardboard cut-out of the Operation game I want to tell them that the plastic-seeming heart at which they prod is actually living and a site of great pain; while, no one prepared me for the fact that a low-blood sugar will bring about the most vivid and violent flashbacks you will ever experience in your life. No one could prepare me for those things, because like the understanding that diabetes affects more than your physical self, ideas of social location are also often missing from medical dialogues, practical and theoretical.
Instead, wading through the healthcare system and then the medical research of my graduate thesis I have been left feeling like I am the uncool kid being gossiped about by all the popular kids in the school yard. I may feel physically cared for by medicine, but not whole-heartedly cared about. To this end, I say: though to outsiders online communities can seem frivolous, it is the whole self that seems the hope of such communities of illness. Every post you write, every chat you partake in, every personal article you read, every point at which you take the time to consider a person’s view-point not your own is, to me, a site of hope for better things. It is those things that say I am more than just a textbook rendition of illness; I am more complex than a statistic; I am a human being and I ought to be treated wholly as such. To me, hope is a verb—it is what you do to make things better and more equitable for yourself and those to come. And for all those people that practice such hope, whether through social media or physical life, I say thanks.
You can read more about Virtue B on her blog: Natural Born Cyborg
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