This was exactly my attitude toward my illness. It worked for a bit. I never walked into a room, a job interview, or a First Day and made an announcement. Sometimes someone would notice the pager-like device I wear on my hip, or the Nicorette-like patch on the back of my arm (not a Nicorette patch) and ask me questions. I responded gracefully, happy that someone noticed and was interested in learning more – or appeared to, anyway.
Most of the time, though, I stayed silent. I kept a supply of candy at my desk. I learned to order medical supplies directly to the office so I wouldn’t find myself with an empty cartridge or an insufficient infusion set. I planned my meals ahead of time so I would know the exact number of carbohydrates that I was consuming, and therefore could take the proper dosage.
Diabetes is a time-consuming condition with real and deadly implications if it’s not treated properly. It is never NOT on my mind. Insulin is a treatment, not a cure. Given in the right amounts, it will keep me alive. Not enough insulin will kill me. Too much insulin will kill me faster.
I was diagnosed with type-1 diabetes in 2005. In spring 2019, I celebrated my ‘half-way diaversary.’ For the first time, I had lived with diabetes longer than I had lived without.
One might think that with 15 years of life experience with diabetes, I’d get the hang of it. And sometimes, I do. Once in a while, I have the small satisfaction of seeing that straight line on my CGM device, indicating optimal blood glucose levels for a period of time. It’s a short-lived success.
Most days though, I see peaks and valleys. I treat over-night low blood sugars with fast-acting sugar that I have around the house: juice, strawberry jam, maple syrup. Add on my consumption of crackers, biscuits or anything sugary – anything to get rid of that dreaded ‘low’ feeling – my blood sugar rebounds by spiking to an above-normal level. I spend the rest of the day filling up my water bottle and taking multiple trips to the bathroom. I’m tired, too, because of the lack of sleep that often comes with treating middle-of-the-night highs or lows.
“What can we do to accommodate?” my manager asked me in my first week of a new job. I had never been asked that before, and the question took me off guard. “Nothing!” I responded, and at the time, that seemed like the right answer. How can someone else accommodate a self-managed condition that does different things every day and isn’t at all predictable?
It’s my burden. See Life When Every Day can be a Medical Emergency.
It’s impossible for me not to feel guilt. Or shame.
I often ask myself “what could I have done differently?” and then replay that day’s events – every meal I ate or didn’t eat, every coffee, all the exercise I did or did not do, the amount of insulin I did or didn’t take – that led me to that point. “Why isn’t my blood sugar coming down?” I ask myself for the tenth time in as many minutes, frustrated that it’s plateaued at a point much higher than the normal range. I self-blame. I feel like it’s my fault. I often feel sad, angry, ashamed…
I also feel jealous. Every team potluck. Every time someone brings in Timbits (bite-sized fried-dough confection sold at Tim Hortons restaurants) to a staff meeting. Every time there’s an office birthday party with cake. I recently discovered that I envy those who can eat whatever they want, and how much of whatever they want. Sometimes I find it’s easier to retreat and to isolate myself from the group than to pretend to enjoy myself.
“You couldn’t have looked less interested in being there,” someone once told me after a team lunch that I actually chose to go to.
A week prior it was “why didn’t you go to so-and-so’s birthday party?.”
Well, I could have said:
- “My blood sugars are high.”
- “It’s too early for me to eat.”
- “I feel anxious / stressed / sad / worried / scared / tired and fucking defeated because of my diabetes today.”
Instead, I didn’t say that, because nobody wants to hear it. Nobody cares if I’m having a ‘bad diabetes day,’ or if I was up half the night going to the toilet because I was hyperglycemic and didn’t get enough sleep.
Had this person asked, “are you feeling alright?” I might have even answered ‘yes’ when in my head I was screaming “no,” because diabetes isn’t a sickness. I wasn’t throwing up, so yes, of course, I was alright. Right?
I was terminated from that position a month later.
Maybe that was the wake-up call I needed.
It made me accept that:
- I have diabetes, so I’m not always going to be alright.
- There may be days when I appear bored or uninterested, but that’s almost never the case.
- Human beings are complicated, multi-layered beings, each with a different set of individual needs.
Only now am I really learning how to communicate my needs, because of course I have needs and why shouldn’t they be as important as anyone else’s?
It’s a strength, not a weakness to be able to talk about chronic illness. I don’t need to feel shame and embarrassment, because diabetes is real, and it’s hard (like, really hard) to stay in control.
So here it is:
- I live with type-1 diabetes
- It’s not my fault
- I did not eat too much sugar; my pancreas just broke for no reason around the time I was starting high school
- I’m self-sufficient and I know my medical needs, but sometimes I may need a bit of patience and compassion to get through the day
