Note: Wednesday's theme for Diabetes Blog Week is "What brings you down?"—the emotional issues in diabetes management and the tools that help us cope.
I stare at the screen, the words blurring in front of my eyes, and take in the lines upon lines of text. Each line began with the words "I'm sick of ..." and spelled out an aspect of diabetes that I hated. I sit slumped, sad and exhausted. I'd had a LiveJournal account for over a year, but until now I had used it simply for mindless memes and a log of daily events rather than as a true journal. I click POST, wondering as I do so what those on my friends list will think.
It was early 2005, before the blogosphere or the diabetes online community had really started. The idea of writing one's thoughts and publishing them to the internet was still a relatively new concept to many people. I had kept a private journal for the previous 10 years, and I knew from past experience that writing out my thoughts, emotions, and worries often made me feel better. But only to myself. I steered clear of sharing negative thoughts and emotions with people, even close friends and family. I would let emotions eat at me before I would let them loose.
But in 2004 I was struggling. I was in university, living on campus. My close on-campus friends had graduated, and because I had a guide dog I was housed in the residence for graduate students. This left me feeling out of place and alone. None of my professors or fellow undergraduate students knew that I had diabetes. I had recently begun devouring any autobiography by a person with diabetes that I could find, and was disheartened to discover that every one of them ended with complications. I knew that, with several years of A1c results hovering around 8.5%, my diabetes was not well controlled. I felt constantly exhausted, struggling to stay awake during classes and commutes. I saw high readings daily, even though I prepared most of my own food instead of eating in the residence cafeteria. Several times I missed classes because my blood sugar was so high and I felt so sick to my stomach (ketones did not even cross my mind at the time) or because I was so low that I slept through my alarm. I was conflicted about whether I wanted to go into teaching—and whether I could be an effective teacher as someone with a visual impairment—which just added to my overall melancholy.
I knew that something had to change. Yet, although I had lived with diabetes for well over a decade at that point, I had never dealt with diabetes at an emotional level.
All that ended one evening, in a flood of keystrokes and tears.
It happened after a particularly bad diabetes day. I had struggled with keeping my blood sugar in range throughout the day, despite doing everything right. The final straw came when I prepared meticulously for some exercise—reducing insulin at the meal prior, eating beforehand, testing several times in the hour leading up to make sure my blood sugar was on track—only to arrive and find that the goalball practice I'd planned to participate in was cancelled. I left with high blood sugar and several wasted hours. As soon as I got home I logged onto LiveJournal and let more than ten years' worth of anger, frustration, sadness, fear, and uncertainty out in one massive, tear-streaked post.
I am forever grateful to the friends—many of whom I am still in contact with today (many of whom have moved from online screen names and avatars to "real life" friends)—for reading the weeks of written turmoil that followed and for their flood of support and encouragement, even though none of them had diabetes themselves. But by the end of the torrent of emotions I knew I had the unflinching support of friends, I had worked out some ideas and a plan for improving my diabetes control, and—at the suggestion of a close "real life" friend who followed my posts—I had sought out and made tentative contact with the fledgling diabetes online community.
I think with diabetes we often try to bury the negative emotions. We make jokes about lazy beta cells and low blood sugar incidents, laugh at sometimes serious mistakes, and live life with our family and friends as if diabetes were simply an inconvenience, like having to floss each night. It's only when a crisis hits or is narrowly averted that we pause and allow ourselves to feel frustrated, scared, sad, or angry at having this disease. And, yes, I am guilty of suppressing the negative emotions—I have to, we all have to, or else we would not be able to cope.
There are people out there who claim that being diagnosed with diabetes is the best thing that ever happened to them. They have achieved excellent control, excellent fitness, and are meeting all of their diabetes care goals. I am not one of those people. I struggle with highs and lows daily, despite my best efforts. There was a time when I was striving my hardest and failing to reach goals, when I got incredibly frustrated and felt intense emotions with each blood sugar reading and each A1c result. It led to nothing but stress and burnout, and so I have tried to disassociate blood sugar and A1c results from emotions. It is not good riding an emotional rollercoaster in addition to a blood sugar one.
I still experience negative emotions about diabetes on an almost daily basis. I feel angry when I do something to cause my blood sugar to spike. I feel frustrated during a day of high readings that won't come down despite repeated corrections. I feel scared after a night interrupted by a severe low. I feel sad whenever I hear of another child being diagnosed with Type 1 diabetes. When these emotions come I allow myself to feel them—to spend a day being scared, or to write a post venting some fear, or even to tell a close friend that I'm having a frustrating diabetes day. And once I do that, I move on. I have not had such an outpouring of powerful, negative emotions since that post nearly ten years ago.
In a way, my LiveJournal account was my first blog, although the entries were more raw and unedited than true blog posts, and most were only semi-public. I am still relatively private about my emotions surrounding diabetes, but less so today than I was ten years ago. I still keep a private journal, and still find it a tremendous tool for working through emotions. The wonderful thing about blogging, though, is that it is public enough to feel as if you are shouting to the world, but private enough that your real-life friends and family are not likely to find it amongst the billions of websites out there. It provides a unique avenue for expressing sometimes negative feelings, or just venting, and having people who understand completely read and provide support (sometimes just knowing another person is reading is support enough) without the need to walk around in everyday life suppressing an avalanche of fear, frustration, anger, and sadness. Having such an opportunity has been of huge benefit to me in this diabetes journey, which is as much emotional as it is physical.