When I was in high school, I struggled with a feeling of being weak. In particular, I really felt that having diabetes made me biologically “unfit,” unable to survive without assistance, sickly, and overly dependent on outside help. I looked around at my friends and thought, “if the world descends into anarchy tomorrow, they’ll all be able to hold on and survive, at least a little while, and I won’t.” I know, I know — worrying about survivability in the apocalypse isn’t exactly rational, and it’s not like my friends were a bunch of survivalists — they probably wouldn’t last more than a minute. But I was an adolescent; rationality didn’t enter into it. It was a gut feeling of being “weaker” than my friends on a fundamental, biological level. And it bothered me.
I outgrew that phase, as do most of us (but not all — I still know a few people who seemed to have hopped off the developmental train in high school and never did make it to adulthood). But sometimes I wonder if ALL of me outgrew that feeling, or if there might still be some part of me that holds onto it. And even if there is no part of me that struggles with that particular feeling of deficiency, I wonder how living with diabetes has affected my self-perception and perception of the world.
Diabetes is a major thing to live with. It’s a constant part of our lives, it requires large parts of our attention, and it never takes a rest. And at the same time, it can fall into a state of “routine” where we’re not really consciously examining it. All of this makes me think back to one of the courses I took when I was a graduate student in clinical social work. The course was about the impact of trauma, and one of the big takeaways from the course was that isolated traumatic events were much easier to recover from than “ongoing” trauma. And even if the single traumatic event was much stronger than the “ongoing trauma,” this was still true. Something about the repetition of ongoing trauma made it far stronger than any isolated event could be.
There were a number of reasons for this phenomenon, and I’m not entirely sure living with diabetes would necessarily fit into the model of “ongoing trauma.” But I do remember that one of the key reasons the ongoing trauma had such a strong impact was that it became “routine,” that the negative experience became the “expected experience.” A single traumatic event didn’t alter someone’s view of the fundamental nature of “how life IS” (the trauma was an exception to how life goes, not the status quo), while ongoing trauma changed a person’s perception and expectation for how life goes on a fundamental level.
I think that goes right to the heart of living with diabetes. Living with diabetes means living with diabetes for the rest of your life. Sure, we hope to find a cure, and it might happen in my lifetime. But I’m not holding my breath. And until my doctor tells me I’m next in line for a tested, certified, and readily-available cure, it’s not a place I like to focus my energy. The point is, diabetes is my EXPECTED FUTURE. Whatever diabetes is for me, that’s a big part of how I expect my future to unfold. My feelings on diabetes directly influence my feelings about how life IS, and how life WILL BE.
This is true for all of us. And I think that means two things. One, we need to examine how we feel about diabetes and how diabetes has influenced our perception of the world around us. It’s easy to forget the second half of that sentence. We can feel “angry at diabetes,” “hurt by diabetes,” etc. But we also need to examine how living with diabetes affects how we see “everything else.” Because it colors everything; there is not such thing as a “diabetes-free” lens for us. And two, we need to examine how we see the future.
I’ve worked with a lot of very traumatized kids over the past 5–7 years, working in residential treatment centers in Philadelphia. I ran into this phenomenon of ongoing trauma frequently, and at some point I started to realize something: “hope” is not the answer. You see, when I started, I thought that what these kids needed was “hope for a better future.” But after working with them I started to realize that what they needed was not a picture of a grandiose, roses-and-sunshine future free of problems. What they needed was a BLANK future. They didn’t need to start projecting some better image into the future — they needed to STOP PROJECTING ANY IMAGE into the future.
Living with diabetes, we need to learn this, too. We need to be able to stop projecting into the future. We know we’ll have diabetes, sure. But we don’t know what it will do tomorrow, or next week, or next month. We don’t know if a cure will arrive next year, in 10 years, in 20 years. We don’t know that tomorrow won’t bring complications, or that complications we have today won’t get better. We don’t know.
What we DO know is that right now, we have a relationship with this disease. Right now, in THIS moment, we have feelings about this disease, we have reactions to this disease, and it’s a part of our lens into the outside world. And so, rather than mindlessly projecting our unexamined feelings into tomorrow and the next week and next year, we ought to EXAMINE those feelings today. We should focus on uncovering how we feel about it RIGHT NOW. And then, we need to let go of expectation. The future will come, and none of us know what it will bring.