I live very near a coffee shop called, “Lonelyville.” I pass it on my morning walk. I always think what an odd name it is for a coffee shop. After all, the people sitting there chatting in groups of two and three and the ones on their own bent over their laptops are all there precisely to leave their lonely selves out the door, and feel unalone.
When diabetes patients are surveyed about the challenges of living with diabetes, loneliness is always at or near the top of the list. Living with chronic illness is a lonely affair, whereas short term illness not so much. For instance, break your arm and it will mend in a few weeks or months: You know the experience will end. That allows you to get lost in, and commune about, your poor arm: “Hey there, buddy, what happened to you?” people ask and you get to tell your tale of woe or anecdote. You can show off your cast, people sign it with endearments, and you complain about how itchy your arm is and people commiserate, “Oh, poor baby.” And even if you feel lonely for a while, it will end and your arm will mend.
Diabetes doesn’t end. And for most of us there’s no outward appearance of it, nor how hard you work at managing it. I was out to dinner this week two nights in a row. The first night my husband and I were meeting an acquaintance of his and his new girlfriend. When the conversation turned to my work, she said brightly, “My brother in law has diabetes!” Deducing he had type 1 and had gotten it recently, I asked, “How’s he doing?” She said, “He’s doing really great.” Her enthusiasm let me know that she really had no idea what he’s living with. My husband must have felt similarly for he began to tell them what my typical day looks like: Pricking my finger up to ten times a day, calculating carbs at each meal, constant injections, all the daily planning and organization and on and on, and on. Their eyes widened just getting this small insight. And, I thought listening to my guy, Wow, look at how much I do in addition to my “normal” life! Yet I can’t allow myself to think of it as more than “normal life” or it would be too overwhelming, or make me feel sorry for myself, and that would impede my every effort.
The next night we dined with a friend and met her beau. When she and I both took out our Apidra to shoot up for dinner, hers was in a pen and mine in a vial. The beau looked mystified and asked about the difference. A little more conversation told me he didn’t know much at all about managing diabetes. Whether my friend chooses not to share much with him or he’s not that interested, I don’t know, but I wondered, isn’t that a lonely place for her?
At some level diabetes just is a lonely place some of the time. I’m sure this is true of any long-term illness or grief experience. But I’m not drawing any comparisons here, only remarking on an essential reality of living with diabetes. And, even though I work in diabetes, know a multitude of patients and diabetes educators, have an unimaginably supportive husband, diabetesjust is often a lonely affair. My loneliness lessens in those moments when I talk with my friends who have diabetes because diabetes is always part of our conversation, even when it’s just sitting there beside us unspoken.
So really, all those blog posts that went out from the diabetes bloggers at the Roche social summit after we returned (a few posts ago), all those shouts while we were on site of, “Gosh, it’s so great to finally meet you!” or “We ought to do this on a regular basis!” or “I couldn’t wait to get here!” All the uncontained joy and bonding and merely sharing the same air and recognizing this complex dance we do every day with all its machinations and emotions, well, it was all about for a few moments not feeling so alone.