Finding Community

 In the last two weeks, I’ve been to two Type 1 diabetes events. This is more than I’ve been to since I was first diagnosed 26 years ago. There’s a part of me that avoided these kinds of things, calling up the old Groucho Marx quote that “I wouldn’t want to be part of a club that would have me as a member.” 

But the fact is, I am a member of this community, even if I didn’t have to pledge or pay to get in or do anything more than find out that I had a (as of yet) incurable illness that is with me every day of my life. 

The first event was two weeks ago when I attended an event put on by Diabetes Canada. It was great; a chance to hear about the latest developments in diabetes technology, find out about other organizations like the Type 1 Diabetes Think Tank and Connected In Motion, and try those low carb plant-based noodles I’d been curious about. 

Most important for me, it was an opportunity to sit in a room full of people who either had Type 1 diabetes or were affected by it. There were parents and siblings, but the majority of people there were people like me.

The food at lunch had the carb count listed and throughout the sessions you could hear the various beeps and tones of glucometres, pumps and CGMs. At one point, wanting to verify my blood sugar, I took my glucometre out of my purse and tested openly, as the fellow behind me took an injection with his insulin pen. At the table where I was sitting, the woman next to me and I exchanged diagnosis stories (she had, like me,  also been diagnosed later in life) and I commiserated with a young man curious about my CGM.

“So this is what it feels like to be a part of the Type 1 community,” I thought.  It felt good.

Yesterday, I went to the Unboxing Type 1 conference, which was about using social media and other platforms to talk about Type 1 diabetes, finding support and community. It was a cool event, held in a very trendy downtown loft space. We heard honest talk about mental health, body image, acceptance, and support. There was a photo booth that would allow you to boomerang your picture back to your email, and we were encouraged to hash tag as the day played out. 

Here I was, no doubt quite a lot older than all of the people in the room, but that didn’t matter. The majority of us were people with Type 1 diabetes, eager to join an on-line community and meet IRL (in real life; who knew there was now an acronym for that???)  We talked about reaching our own audiences while staying honest, real and relatable (YES!). We were advised to remember to disconnect from our social media accounts. We learned that the opposite of FOMO is JOMO (the Joy of Missing Out). 

And once again, I couldn’t have been happier to be there. I shared a table with two wonderful women in their mid-30s who were both diagnosed as kids. The age gap disappeared once we started talking about pump sites, highs and lows, daily management, and the other stuff that we could share, knowing that we all “got it”.  I have no other Type 1 people of any age in my immediate circle. I love how supportive my husband and my friends are, but they’re understanding is based on me telling them how I feel and their perceptions of how I seem to be handling things. 

As I soaked in all the information that was being lobbed at me, hearing a YouTube star talk about how her videos show her site changes and daily life with diabetes,  I remembered I had been at two previous diabetes events, way back in my early years with this illness.  And both had been nothing like this. 

The first was a diabetes education seminar I was sent to by my endocrinologist, some three months after diagnosis. It was for adults, and most were Type 2s. I was likely the youngest in a room full of older people (which is the opposite of how I felt at the Unboxing Type 1 event; I see the irony now!). I so clearly didn’t want to be here: I  was as comfortable as I could be with having to inject myself with four needles a day and had an okay understanding of insulin to carb ratios. The afternoon session demonstrated how to visualize portion control to correctly calculate those carbohydrates. A mound of mashed potatoes that looks like the size of your clenched fist (and in this case, my fist was very. tightly. clenched) was about half a cup. (And that was actually a useful visualization.)  Someone asked about salt and potato chips. There were other challenges discussed.  We talked about potential complications. I was three months in and I really didn’t want to hear this. 

I got bored (anxious)  and left.  That Groucho Marx quote played in my head, over and over and over. This was definitely not a club I wanted to join.

A month later, also in that first year, I went to a diabetes meet-up that I’d discovered, advertised at our local supermarket. I was still in the “honeymoon period”, on relatively small doses of insulin at that time, and extremely insulin-sensitive. We went around the table, and for some reason, that first ice-breaker exercise was to say how many units of insulin we took every day. 

The man beside me shared, So did the others. It was my turn, and whatever amount I revealed, was much lower than that of the other people there. The man beside me shook his head. “You’re not diabetic!” He yelled. “You’re a diabetic poser!” 

I hung my head in shame, then thought, “Wait a minute…. Why would anyone ‘pose’ as a diabetic.” 

I thanked the organizer and left. 

Flash forward to yesterday. One take-away from the Unboxing Type 1 event was the idea that everyone’s diabetes is their own diabetes, yet we all share that one commonality — a faulty pancreas. 

Yesterday’s icebreaker exercise was different. “Introduce yourself to the person next to you, and tell them something about yourself, and it doesn’t have to be diabetes-related.” That made a lot of sense to me.