Diabetes Awareness Month: Live a day in my shoes
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I didn’t want to write this.
This Diabetes Awareness Month is a reminder of the barriers in place for people like myself. While the campaign is focusing on bringing light to the heartbreaking financial difficulty so many people face when looking for care, it is also a reminder of the emotional and psychological barriers in place.
I call myself an advocate for those living with type one diabetes, but this year the thought of putting pen to paper to write about my own experience felt like an endless dark wave rising above me, because if I admit how I really feel everything would come crashing down.
My truth is I live with type one diabetes, but at the moment it controls me.
For 17 years I’ve lived with type one diabetes and from the minute I entered the Emergency Room at the age of five, my life has been dictated by numbers. My family will never know why my pancreas stopped producing insulin, it couldn’t have been prevented and there is no cure. Lifestyle and diet will never “make me better” and if I had been taken to hospital a few hours later, I would have died.
In a day I would prick my fingers with a needle to draw blood a minimum of eight times, be injected with insulin five times and there would be endless carbohydrate and sugar counting just so I could enjoy a meal. But every day was different, and eight would turn into 12 and five into 10. At five, doctors were telling my family that my life expectancy had been cut in half and if I wasn’t good enough at keeping control, it would be shortened even more.
At five years old, the feeling of failure or not being close enough to normal was already there.
By the age of 10, it was common for other children and adults to say, “I don’t know how you do that, I could never live like that.” I was lucky enough to be granted an insulin pump, a small machine that mimics the way the human pancreas works and I suddenly had more freedom in my life, including what I ate and when. While I felt more in control, I could always confidently answer that I don’t remember being ‘normal’, life began and ended with my diabetes.
“Oh, I know exactly how you feel,” they would say. “I have a family member who is a type one diabetic.” I learnt how to bite my tongue quickly but even now I have the same thought: “How, exactly, does that mean you know?”
They haven’t felt their body betray them time and time again, they haven’t had other children run away and scream when you try to play with them because they’ve been told your condition is contagious. They haven’t had to grow up fast because the reality of type one diabetes is quite simple:
- It is the leading cause of blindness in working age adults
- It is a leading cause of kidney failure and dialysis
- It increases the risk of heart attacks and stroke by up to four times
- It is a major cause of limb amputations
- Diagnosed depression, anxiety and distress occur in more than 30% of all people with diabetes.
Now, at 22, I look people in the eye and tell them I inject myself every day, I make myself bleed everyday so I can live and I have no choice if I want a future. My daily life is still a minimum weight blood glucose checks a day, continuously thinking about how much insulin I should give myself via my pump and constantly counting carbohydrates and sugar in food.
It’s hoping I don’t wake up with high blood sugar, vomiting as my body tries to rid itself of toxins, it’s feeling my hands shake and the quiet, sinking feeling of my blood sugar dropping as everything becomes blurry and soft.
The average person with type one diabetes has to make an extra 180 health-related decisions per day. Even deciding if you want to buy a coffee becomes a mathematical equation and right now, I’m disillusioned by the demands of my illness.
Diabetes burnout is a term used to describe a state of frustration and disregard surrounding the condition of diabetes. It’s a state of mind those diagnosed with type one often reach after living with it for several years.
The frustration can’t be tied to any one thing but a key factor is that doctors and the general public say it can be controlled, but today is not like tomorrow and it definitely isn’t like yesterday. Type one diabetics are people with lives that continuously change and while some of us have access to life changing technology, it’s easy to feel left behind as the world demands “Why can’t you do better?”
The answer is I’m doing my best. While the thought of facing another day watching my blood sugar levels rise and fall, my body following along with it like a untethered buoy drifting in ocean currents makes me want to hide, it’s all I can do.
So come live one day, two days, three days in my shoes and understand that there is no break, no end to it. Yes, there should be accessible care for all, but that care needs to be extended into understanding that 17 years is just the beginning and with each year that dark wave only gets bigger.
But at least if I share my story, others will know they’re not drifting alone.
