You mean I’ll have this forever?

Every person I have met who has diabetes has a diagnosis story.  And every person I have met who has diabetes has vivid memories of this incident.  Since I was recently diagnosed and am just entering the diabetes community, I feel as though I’ve told my diagnosis story more often than any other story I’ve told in my life.  The people I meet are often eager to share their diagnosis stories with me and our connection is made over the shared experience of the simple blood test and doctor’s statement.  Focusing on my diagnosis and beginning treatment plan has kept me in the present tense and able to prioritize my most immediate “next steps.”  I have had type 1 for five months now and it’s just starting to hit me that this will be forever.

I know that I will have diabetes forever, of course.  I know that to be factually true.  I have an older brother who has been treating his diabetes for over sixteen years, and we have family friends who are middle-aged and older who are still actively treating type 1.  Realizing this to be true for myself, however, has been a five-month-long process full of subconscious denial, gradual fears and sudden epiphanies.  As I mentioned in my last post, I attended the summer workshop hosted by the Sports and Diabetes Group Northwest in late July and found myself surrounded by forty other seemingly healthy people with type 1.

I walked into the room and, while I was terrified that I did not know a single other person in the room, I felt immediate VIP status.  It was like this was an exclusive club and I was granted membership.  This was an especially great feeling to have after a few months of often feeling the exact opposite (when, for instance, it came time to binge on doughnuts with coworkers), so I excitedly looked around the room to observe the other members.  I noticed young children, older adults, people who fit the stereotype of an athlete, people who didn’t, people with visible insulin pumps, people who came from the office, people wearing cycling team shirts, and the list goes on.  I felt reassured that this could be another “welcoming committee” for me in my diagnosis navigation.

At the very beginning of the program, we went around the room and introduced ourselves with our names, how long we had had type 1, what sports or activities we enjoyed, and what we hoped to get out of the workshop.  I knew that we were a diverse group, but the far stretched spectrum of interests was still surprising to me.  People’s athletic involvement truly ranged from casual to professional.  Professional!  And as the program continued, people of all ages asked detailed questions on a range of topics for which I barely had terminology.  There were more and more specific questions about how to best prepare for athletic activity and which pumps helped with which sports and how to measure blood glucose levels while exercising.  I felt like I almost couldn’t keep up and yet I was excited to hear that people cared so deeply about such information.  People listed strategies they’d used in the past and how many years it took to form new strategies.  Long-time diabetics shared stories from when they were younger.  And somewhere along the way I felt a very slow wave wash over me.  I closed my eyes while one older woman was speaking and I could finally name the realization:  this will be forever.

Following the program, I went to thank the presenter for sharing his insights and I was in the middle of stating how much I appreciated his approach to diabetes care when I started to cry uncontrollably.  I have always been an emotional person, so the act of crying does not necessarily faze me, but I was caught off-guard by how the entire feel of this exclusive club had changed for me in just two short hours.  I suddenly had questions about how to turn in your ID bracelet and apply for a refund.  You mean everyone here has type 1 diabetes?!  Still?! I couldn’t stop thinking about how I hadn’t even allowed myself to truly grieve for this aspect of my diagnosis.  What did you expect? Well, it apparently took these five months to get to where I could more fully understand this truth, as obvious as it may seem.

And now, each day, I am reminded of it in everyday things.  I have already shifted to a more long-term approach to my care plan and am seeking additional resources for what I will need to do in the future.

It takes time, of course, but I have lots of that.  I mean, I have forever to get things figured out.  One step at a time.

Emily Patton

Emily Patton is one of those not-diagnosed-until-age-27 people with Type I. She is currently living in Seattle, Washington, where she admires Mt. Rainier from her car window during daily commutes. She grew up in Columbus, Ohio, but has since lived in Berkeley, California, Austin, Texas, and even served short stints in a small village in the Cascade Mountains.