My T1D Diagnosis Story

I was diagnosed with type 1 diabetes on August 31, 2004, when I was ten years old. I had been having symptoms of being really tired, which was unusual as a ten year old with ample energy, and had been drinking A TON of water. Because it was the summertime, I think at first my parents just chalked up the excess drinking to the heat and being physically active during the day, but after a while it became an obvious issue. I can remember downing multiple glasses of water an hour, but still feeling like I hadn’t had anything to drink in days.

I remember visiting a family friend’s cottage and asking for water every 15 minutes, to the point where I think it got to be annoying. My parents took me aside and told me to knock it off (obviously not knowing something else was going on). I remember trying so hard not to ask for more water that I actually licked the condensation off of a bottle of water when I got a new one. Very normal behaviour for a child, clearly.

With all of the water also came the need to pee, basically 24/7. I was at an age where I was embarrassed about this because I knew it wasn’t normal to need to stop multiple times to use the bathroom on a two-hour drive, although I didn’t know anything was medically wrong, of course. There were many close calls, including one where I had to run into the men’s washroom because there was such a long line at the women’s (why is that?!), and one time where I actually peed my pants between getting out of the car at a roadstop and trying to run to the bathroom. Fun times.

This had been steadily getting worse throughout the summer break, so at the beginning of August my mom called our paediatrician and got an appointment for the end of August. I can remember her and I leaving my two brothers and my dad at the cottage where we spent most of our summers to head home to the appointment. I was bummed at this was key summer time right before school started, and I didn’t want to miss it. I was happy to have some solo time with my mom, and we stopped at Tim Horton’s after getting home and I got a special treat: a newly released iced cinnamon bun. This was a big deal as we didn’t get treats super often, and I loved every second of it. Looking back, though, a 60+ carb cinnamon bun was probably the last thing I needed in that moment.

The next day, August 31, we went to the doctor’s office in the morning and I was seen by a few residents and students who took note of my symptoms before finally seeing the doctor. At this point I was also having fairly severe headaches, and my mom was taking a class for her undergraduate degree about human anatomy, so I got to impress the doctors by proudly exclaiming that I had a headache in my right frontal lobe, which they enjoyed. We were then sent to get blood work a few floors down and were told we’d get a call if anything came up, so we headed home.

A few hours later, around 4pm that day, the doctor called with the news. I can remember standing in the kitchen while my mom spoke with the doctor and quickly became emotional, repeatedly asking him “is it type 1 or type 2” because I think with her knowledge of diabetes at the time she must have known type 1 was more intensive (typically). The doctor was reluctant to say much over the phone, but told us to head to the Emergency Room straight away where someone would help us. My mom hung up the phone and gave me a big hug, assuring me everything would be fine, and then off we went to the hospital.

When we go to the ER, we found out that my blood sugar was 44.4 mmol/L or 800 mg/dL and I definitely had type 1 diabetes. I was given my first shot of insulin that night, and we were given instructions to return to the hospital first thing the next day to go to their Diabetes day program. Funny enough, typically newly diagnosed children are kept in the hospital overnight for a least one or two nights, but my hospital was piloting a new program where people went home the first few nights and just went the next day to the outpatient clinic. They got rid of that pilot a few months later because, as my mother will attest, it’s terrifying to be a parent of a child who’s just been given this earth-shattering diagnosis and then sent home as if nothing had happened. What do you feed a child with diabetes? Do you need to check them in the middle of the night? Valid questions, but they’d need to wait until the next day (haha).

I don’t remember this, but my mom says I slept through the night for the first time in months after getting that dose of insulin. I didn’t need to wake up to pee or get water from the kitchen for once. The next morning we went to the outpatient Diabetes clinic and learned everything about needles, insulin, the proper diet (this was 20 years ago, so there were more “restrictions” than what newly diagnosed people get these days), and were told we’d be there every day for a week until we got into the swing of things. I’m proud to say that I gave myself my first insulin shot - I wanted to learn to do it myself and not rely on my parents (although they supervised, of course).

The next few weeks were a blur. I didn’t know anyone with type 1 diabetes, and I was only the second child at my school to have been diagnosed, so there was a lot of self-advocacy and education needed. I can remember feeling oddly excited in the beginning after my diagnosis, which might be different than what most people expect. For a middle child with two brothers, I was suddenly the center of attention and EVERYTHING revolved around me, which I loved. People sent cards and gifts, and everyone was calling me brave. The novelty quickly wore off, though, and the following months were a huge adjustment period.

After six months on injections, I pushed hard with my healthcare team to get on an insulin pump, which had only JUST hit the market in 2005. Check out the pictures below of me learning how to use my pump (don’t judge my outfit, it was stylish then, I swear!), which definitely made things easier when it came to all the injections. Note my diabetes bears, Ruby and Rufus, providing emotional support as I learned how to do my insulin pump site changes! Apparently the ones I had are now retired (rude) but I’ve linked the newest versions if you know any kids with diabetes who might like one!

Overall, my diagnosis was a tough transition, and I can’t believe how long it’s been and how the time has flown by. I often remark to friends and family when asked that I no longer remember the day-to-day of life without diabetes, only specific moments before the age of 10 where I wouldn’t have had it. If you’ve recently been diagnosed, I’m sorry. While this disease does suck a lot, it won’t be long before it just becomes a part of you and you won’t remember life without it (in a good way). It’s amazing how adaptable we are when presented with these types of challenges. If you’re feeling down, check out my post all about some unexpected benefits I’ve found from living with diabetes. There might be some you’ve never thought of, and I’m sure you’ll eventually be able to add to your own list over time.

Sending lots of love to all my newly diagnosed friends! xo