what it feels like: type 1 diabetes is a ‘constant layer of stress and complexity’

michelle anderson relies on strict routines in her life. she is vigilant about what and when she eats and scheduling in her exercise workouts. she also stays on top of checking her settings and alarms for the wearable technology that monitors her blood sugar 24-7 and allows her to send the required amounts of insulin into her body for regulation.

but even with the innovative technology and a supportive family, type 1 diabetes is challenging and non-stop. you don’t get a break from it.

“it is a constant layer of stress and complexity that’s affected a lot of the things that i do. i used to love to run. i stopped doing that because it can just be so complicated to get your sugar exactly right,” she says. “good management of diabetes takes an incredible amount of effort and discipline. those things aren’t easy on top of all the other things that we have in our lives.”

anderson, a 26-year-old media relations manager in toronto, says that her diagnosis of a chronic disease at age 18 has empowered her, out of necessity: “i really do feel like i can deal with anything.”

understanding type 1 diabetes

she’s one of an estimated 300,000 canadians with type 1 diabetes. the average incidence rate has been growing at about 5.1 per cent per year, which is higher than the global average, according to the juvenile diabetes research foundation. although most people are diagnosed with type 1 diabetes as children, about 25 per cent, or one in every four, are diagnosed as adults. in fact, they can be diagnosed at any age following what is usually a quick onset of symptoms and must be managed immediately with insulin by injection or insulin pump that sends insulin directly into your bloodstream.

why is all this so critical? your body depends on blood sugar, or glucose, in your blood for your main source of energy to keep going. people with type 1 diabetes don’t have a functioning pancreas to produce insulin, the hormone that delivers the blood sugar to cells. they rely on insulin supplied to their system, and have to balance their own unique body chemistry. even with a tightly followed regimen, they can have dangerously high or low blood glucose levels that can be life-threatening in extreme cases.

and insulin, although it’s a life-saving canadian discovery, is not a cure. keeping blood sugar levels stable doesn’t prevent the possibility of serious side effects like vision and nerve damage, and difficulty controlling cholesterol and blood pressure. people with diabetes, type 1 and type 2, are twice as likely to have heart disease or stroke as someone without diabetes, says the centers for disease control and prevention.

perhaps as challenging as the physical side of the disease is the toll on mental health. for anderson, it’s not just the concern of daily management, but the stress created by lack of understanding and stigma – something she hopes to change by sharing her story.

“judgment and stigma have been a big thing that has created stress and anxiety for me,” she says. “people often conflate type 1 diabetes and type 2 diabetes. i remember a few people asked me, ‘oh, did you eat too much sugar? is that why you got diagnosed?’ which is incredibly frustrating when i was probably my healthiest i’ve ever been. and i still feel the stigma to this day, to be honest. people assume that you get type 1 diabetes because of lifestyle, which is not the case. it’s a genetic autoimmune disease.”

early symptoms and diagnosis of type 1 diabetes

it went undetected for anderson when she started feeling anxious in high school. she’d tense up and perspire and then feel what became a persistent thirst. “i remember i would always ask my mom to make me these giant jugs of lemonade and i could not satisfy my thirst. but i was 17 and going through a lot of changes. i was working out a lot and became a vegetarian, so i thought that these life changes were maybe making me thirsty.”

after she graduated from high school and was getting ready to leave home for residence at western university in london, ont. in the fall of 2015, she began to feel physically different and had extreme fatigue as well as the insatiable thirst and frequent urination. that september at university, she could never wake up in time for her early morning classes. then randomly one day she was about to go into the dormitory bathroom when she fainted, hitting her head on the heavy washroom door as she feel to the floor. her roommate called the campus emergency services and she ended up at the hospital er.

“in the ambulance, they had taken my blood sugar and asked me, ‘do you have an explanation as to why your sugars would be so high?’ and i was completely perplexed,” she recalls. her head from the impact checked out fine, but she was kept in hospital for bloodwork, not knowing why or what was going on. “i remember being in the hospital bed and obviously i was beyond terrified and beyond scared. i remember a nurse or doctor doing her residency saying, ‘we think we might know what’s wrong with you, but i’m going to wait for my boss to confirm.’ and i yelled at them, ‘you have to tell me what’s wrong.’ she said type 1 diabetes.

anderson’s dad arrived when a doctor came in to confirm the diagnosis. then she was rushed through basic tips on how to handle type 1 diabetes and told to pick up insulin at the pharmacy. “i don’t think i got the best of treatment,” she says, adding the doctor even commented that it would have been different if she was diagnosed before she turned 18 when type 1 diabetes resources and support services for children would be available to her.

“they talked to me a little bit about ratios, like if i’m eating 30 grams of carbs, how much insulin i would need. so they did a very elementary lesson, but it was in no way enough to prepare somebody for the new kind of life.”

and that new life began with a lot of emotion that everyone tried to keep under control. anderson says her mom felt guilty about not recognizing the early symptoms because she has two brothers and a nephew with type 1 diabetes. family history of the disease puts people at higher risk. there was also relief for anderson because now at least she knew what was wrong and there was a solution to the tiredness, constant thirst and need to urinate.

learning to manage and treat type 1 diabetes

she started her treatment with insulin pens, where she pricked her finger throughout the day to use a drop of blood on a glucometer device that measures blood sugar. then she would figure out the amount of insulin she’d need to bring her blood sugar into normal range and inject it with the pen.

“i thought it was as easy as you eat a meal, you immediately take insulin. i thought it was as simple as that. unfortunately, it wasn’t,” she says.

“i don’t think it’s changed the big things in my life. i would be doing the same career and still have the same friends and same fulfillment and interests, but it’s changed my day-to-day.”

after about four years of using the insulin pens, she moved to the popular system of a wearable continuous glucose monitor that sends your blood sugar readings to a receiver device. you can also connect the system to your smartphone with an app. she wears an insulin pump that delivers insulin through a small tube that goes under your skin.

while there is support on how to use the technology for best results, what isn’t talked about often enough for women is how to feel attractive and confident using these devices, she notes. anderson was very self-conscious when she first started wearing them, about three years into dating her partner of seven years, dylan giffen, an offensive lineman for the toronto argonauts.

“he is incredibly patient and attentive, and as engaged as i want him to be. i don’t want him to be constantly checking my sugars. i know that some partners will have the app on both people’s phones. but this is something that i deal with independently.” she also hasn’t joined any support groups for type 1 diabetes or reached out for counselling because she is a private person who has found her own ways to cope.

what helps? she does some personal journaling and makes the most of physical stress outlets, like weightlifting, kayaking, hiking and time with her partner and her family, including her older sister who often forgets that she has type 1 diabetes. “i’m okay with that because i don’t want it to be my defining trait.”

planning for the future with type 1 diabetes

but again, the disease is always with her, influencing her thoughts and decisions. the couple would like to have kids, but she’s concerned about managing her disease when she’s pregnant, although her doctor says her blood sugars are fantastic. women with type 1 diabetes can have safe pregnancies and healthy babies, but if their diabetes is poorly controlled, they’re at higher risk of miscarrying or having a baby with a birth defect, according to diabetes canada.

anderson also thinks about her wedding day – ideally, an event she would experience with joy and relaxation, but still be disciplined about her blood sugar levels.

“i am a total stickler about my sugars. if my sugar’s so high, i get upset and frustrated. but for my wedding day, maybe i’ll ask my sister to check my sugar,” she says, noting the complexities of maintaining the safe blood sugar range are a barrier to relying on others.

she can’t let her guard down without risk and vulnerability.

“it’s so hard to explain things to people with such a huge curve when you get into the nitty-gritty of blood sugars and what’s okay and what’s not okay. it sounds simple, but it’s not always.”

for more information and support services for type 1 diabetes, visitdiabetes canada.

karen hawthorne is a toronto-based writer.