I keep getting told about oranges and wonder why I never got any. Right in the middle of summer break from school, I was completing a short stint at the main Aga Khan University Hospital (AKUH) – after being given my diagnosis: childhood-onset of type-I diabetes.
A little background: the orange is central to how many type-I diabetics remember their diabetes diagnosis; where "patients" would be told by their nurses to practice sticking a syringe into the fruit. The orange was supposed to simulate respective injection sites, and the syringe would give them the insulin that they needed to live. I (obviously) wouldn’t know about this – because I didn’t get any oranges.
But that is where the (only) difference starts and ends. Everything else about our type-I diabetes illness remains constant and very similar. This is where nobody mentions the bruising from repeatedly injecting at the same spot or the little dots of blood from accidentally hitting a vein with the syringe.
Day in and day out. Time and time again. At least three times a day, for the rest of our lives.
I have been a type-I diabetic for a little over 28 years as we now speak, and my new endocrinologist recently asked me to tell her my story of being a diabetic.
Like a sore thumb, some parts of my story stick out more than others; as an example: the dangerously high 950 mg/dl fasting blood sugar reading that brought me to the AKUH for more tests – the results of which would give me the (earlier mentioned) definitive diagnosis. Turned out that it wasn’t a freak reading, after all, that my mother originally took it for.
My pancreas (the organ that is responsible for producing insulin) is like a cellphone without a charge: being physically there, but not functional and (therefore) not usable
In 2021-2, 26.7% of adults in Pakistan were affected by diabetes making the total number of cases approximately 33 million. Of these, type-I diabetes constitutes less than 2% of the total diabetic population – where its incidence has been reported as being 1.02 persons, per 100,000 people, per year.
Having type-I diabetes means that my body cannot and does not produce insulin: a hormone that moves glucose from our bloodstream into the body's cells to make energy. My pancreas (the organ that is responsible for producing insulin) is like a cellphone without a charge: being physically there, but not functional and (therefore) not usable.
Recall that the theme for World Diabetes Day 2023 was "Access to Diabetes Care" and the slogan was "Know your risk, know your response". On a personal level, I felt that access to diabetes care is as much intangible (mental health, social issues, amongst others), as it is tangible (availability of medication).
Only when patients strike a balance between the two, will they be able to talk about something that is the theme for World Diabetes Day 2024–2026: "Diabetes and well-being". The campaign focuses on the importance of physical, mental, and societal well-being for people with diabetes and those at risk.
Questions. What caused my diabetes? Was it my environment? Genetics? Or Venus being in retrograde? I don’t know, and I won’t speculate – because research is in progress to give me these answers.
Back when I originally got my diagnosis, I was told (amongst other things) that I could eat everything “in moderation"; it shouldn’t be a surprise then, that I thought being a diabetic would mean a regular diet and not a permanent lifestyle change. We had a family dinner the night after I got discharged from the hospital and I knew our hosts would have pizza on their menu; but moderation was key, right? I, hence, didn’t think much of the diagnosis at the time – mostly because I was very (and I mean: very, very) quickly introduced to Diet Coke and sugar-free syrup on pancakes.
I was due to start year 10 at school in another three weeks and little did I know just how much my life had changed; this realisation hit me during my first three-monthly consult when I asked my endocrinologist if I could occasionally cheat and eat unhealthily. I didn’t get a definite answer; but what could she have said? Ha!
If I sneaked candy or didn’t test my blood sugar, there were consequences from elevated blood sugar. Indulging or not doing the right thing as a diabetic (even as the teenager that I was when I was diagnosed) was more than going against doctors' instructions; it hurt me in the process
The thing is, you grow up quickly when you are told of the complications of diabetes. My doctors warned me that a high blood sugar average (called an A1C) could lead to other complications: like limb amputation, organ damage, or even blindness. In time, I learned how to handle the insulin injections and the finger pricking to test my blood sugar levels and how to figure out if I was dealing with high or low blood sugar. Being extra thirsty signaled potentially high blood sugar levels and with low blood sugar, there was a subtle disorientation. The biggest shock, though, was that no two carbohydrates are alike. The 38.3 grams of carbohydrate in the no-added-sugar caramel truffle ice cream at Baskin Robbins needed more insulin than the 38.3 grams of carbohydrate in the trail mix that I occasionally indulge in. The caramel in that "otherwise" no added sugar ice cream, always spikes my blood sugar. And no dietary book or nutritionist ever pointed out that footnote. The only way I figured this out was through experience and nothing else.
Sometimes I overcorrect when injecting insulin, such as when eating fried foods. I often still think, “Surely those French fries will push my blood sugar into the 300s” but sometimes they would not. For reference, my post-meal target blood sugar reading is 150 mg/dl – stretched to 165 mg/dl. But then, because of low blood sugar, I would be left scrambling for the first high-carb item I can find — usually biscuits or a regular Coke.
If I sneaked a candy or didn’t test my blood sugar, there were consequences from elevated blood sugar. Indulging or not doing the right thing as a diabetic (even as the teenager that I was when I was diagnosed) was more than going against doctors' instructions; it hurt me in the process.
In retrospect: growing up as a type-I diabetic did make me feel quite "different" and I, hence, never really spoke about it. To be honest, this was another addition to the childhood equation we're all more than familiar with growing pains (being very much) in action. And nobody enjoyed those.
But with age, over time and as I became somewhat cognizant of the person that I was apart from my type-I diabetes, I connected the hard part of my "condition" (availability of and access to medical supplies and health care) to the softer part of it (acceptance).
And if I can be a little candid about it, I still don’t talk about my diabetes. I don’t hide it anymore; but when I don’t need to, I don’t mention it – either. I can work long hours, travel, and yes: eat anything, in moderation. I can have that blood sugar-spiking slice of my favorite margherita pizza; all apprehensions aside, I’ll "cover it up" immediately after. A red-eye flight? I’ve got to ensure that I have enough insulin to cover me through the night.
It’s hard, I know – I really do. But I am fortunate.
I could have continued dwelling on the difficulties of being a childhood-onset type 1 diabetic, but I chose not to. And in all honesty, I wouldn’t have it any other way.
I can afford health care; many others cannot, especially with rising insulin costs. Diabetes remains a constantly moving target, despite the advancements in technology. Constantly pricking to check my blood glucose levels has calloused my fingers, just like how my insulin shots have made my regular injecting sites a little sensitive.
But what about that first date? Telling him about my diabetes might be the easy part; but how do I handle the first-time insulin administering in front of him? And, what about any children I would have? Would they genetically get type-I diabetes? The odds of my future child getting type-I diabetes is 1 in 100. But if that happens, I think I’ll be completely adept (by then) at managing my child’s chronic illness.
I could have continued dwelling on the difficulties of being a childhood-onset type-I diabetic, but I chose not to. And in all honesty, I wouldn’t have it any other way.
So, today if life gave me the orange that I didn’t get at the time of my diagnosis, I’d use it as a zest or garnish. Or, if I’m feeling a little adventurous – I'll use it to make an orange cake. Because moderation will always be the name of my game.