My Diabetes Stopped Me From Being A Normal Person 

Sarah Fazli tells her story of struggle and triumph with diabetes highlighting societal and structural issues surrounding it.

My Diabetes Stopped Me From Being A Normal Person 

The very clichéd opening to any diabetes related blog is always as follows: 

On August 15, 2027 at the age of 96 my life was changed forever. I was tragically diagnosed with type 1 diabetes.” 

Ask me, I’ve been there and I’ve done that (guilty, as charged) and will (therefore) save you from the sappy, sob stories. Having been diagnosed during my pre-teens, my type 1 diabetes easily became a part of life and simply something I had to deal with. Several things kept me motivated in those early years:

  • Wanting to keep my doctor happy.

  • Wanting good HbA1c results.

  • A logbook to fill in, so I could see that I was testing enough. I had decorated this logbook, making it my happy place – because well, hello, childhood!

  • (Naively) assuming a cure would come in my lifetime.

My efforts paid off in keeping my blood sugars under control and I benefited from a reasonably long honeymoon period where my body did (kind of) assist in making some insulin before my pancreas fully and completely conked out.

But fast-forward a couple of years down the line, my mindset drastically changed. I experienced everything that comes under diabetes burnout that often and somehow gets missed in transit.

I wasn’t upset I had diabetes – because being upset about it was never part of the equation. It was more about the anger issues, where the “why” and “why me” were constant questions. I felt that it was unfair that I had to deal with diabetes (of all the things in life), worrying about waking up the next morning with a severe hypo or a delayed onset severe hyper. And this was when other people my age worried about looking their best at our upcoming end of term school parties. 

By the time I completed my academic and professional studies and had started working, I was FED UP with my diabetes. Understandably, I only ever wanted to fit in but simultaneously knew that that would never be possible. Why? Because: nobody I knew would understand the injecting insulin or finger pricking for blood glucose monitoring. Class outings and official events became a pain when I would look for places where I could discretely administer my pre-meal doses (if needed).

And if I couldn’t be discrete about it, the endless questions and looks were an absolute dread; these often came from the sanest looking and / or least expected of people. Travelling became a nightmare, when apart from “regular luggage”, my medical supplies became a part of my luggage. In my eyes, my diabetes stopped me from being a normal person. And over time, all of this took its toll on me. 

I decided the most logical solution to my problems was to ignore my diabetes entirely; I almost completely stopped checking my blood sugars and would randomly inject if I “felt” my blood sugar rise. My labs were all over the place and I knew that I was very sick: both physically and mentally. 

But an epiphany (most likely God giving me a sign) of sorts, around the time COVID started, presented 2 options in the form of 2 clear paths: 

  1. I fall into DKA and die soon; or
  2. I take control of my diabetes and use it to (possibly) help others. 

In that moment I knew I could not let diabetes win, I had to tackle it head on. And I did.

These flashbacks come with this year’s theme of World Diabetes Day: Access to Diabetes Care. The focus of this year’s theme would be on: 

  • The importance of knowing one’s risk of T2 diabetes to help delay or prevent the condition;
  • Highlighting the impact of diabetes-related complications and 

  • The importance of having access to the right information and care to ensure timely treatment and management. 

Loosely translated, this covers several key points that include millions of diabetes inflicted people across the world not having access to diabetes care; them requiring ongoing care and support to manage their condition and avoid complications; medicine, technologies, support, and care being made available to everyone that requires them; and governments to increase investment in diabetes care and prevention.

Hold onto this thought for just one minute and consider that (at face value) all of these can be potential “barriers” to adequate and appropriate diabetes care – which is understandable. But this is only one side of the coin, where several other “barriers” that are more internalized and / or personal in nature can also deter adequate and appropriate access to medical care. 

Question: what does this mean? 

Living with any kind of diabetes is a lifelong condition that requires constant monitoring to avoid complications; it can be a considerable challenge – where the inability to follow a prescribed regimen is often termed non-compliance. This, however, fails to acknowledge that for some people the barriers to any kind of medical care might be “intuitive” and challenges involved in glycemic control (for them) might be insurmountable. 

With this background, I engaged in something very interesting over the past few months: connecting with other diabetics, both T1 and T2 and trying to relate to personal / lived experiences that influence patterns of self-care, engagement with and trust in their physicians. This was a very random activity – where I’d connect with anyone whom I would see administering pre-meal insulin doses, while I would be eating out. These people would then say things like, “Meet my mother. She takes Glucophage and you might be interested in talking to her, too”. Oh, the joy! 

The insights I received, were nothing less than astounding – and (all) completely relatable! Everyone described their diagnoses as abrupt, confusing and life changing. They mentioned little opportunity to adjust, and people carried this experienced with them throughout their lives. 

“I spent 2 nights and 3 days in hospital, when I was diagnosed. Post discharge, I didn't really know what I was doing. I was left on my own quickly with an equally quick: “Here is your supply bag, including some needles to inject; test your blood, take six units with every meal, and call us with your readings. There you go.” That “there you go part” was very quick.” 

Admittedly, diabetes clinical care and education is evolving, and a combination of constant repetition, practice, and support leads to eventual mastery in one’s diabetes management. People defined mastery as achieving a complex understanding of their individual glycemic responses to food and insulin administration, which allowed them to reasonably predict what their blood glucose levels were likely to be and how the day looked for them in terms of management. 

“My diagnosing endocrinologist told me: 'This diabetes thing has a head of its own and you must, therefore, be very, very conscious of it. It's a sneaky disease'. I was 15 when I was diagnosed”. 

This “sneaky disease”, however, becomes an entirely different ballgame when faced by a person with low levels of self-esteem and / or social support. People who described their social / familial / personal / professional setups as even marginally sub-par, were the same people who said that management of their diabetes was a mess. One girl told me very explicitly: “’I was once telling my friend about my diabetes, and she was like ‘you're trying to be the perfect diabetic; there isn't one.’ So much for empathy.”

On a more personal level, I know it can be overwhelming. But what I didn’t realize was that there were elements of structural determinants and social context involved and these were a thing with me, too. On one hand, you're struggling with trying to cope with having the disease; but you're also struggling with trying to cope with other people's reactions towards you; and you're struggling to sort of cope with the “how do I fit?”.

Traditionally, diabetes straddles the line between malignant and benign. On the one side, there’s the known complications: amputation, heart disease, blindness — if the diabetes isn’t taken seriously. On the other, there’s just diet and exercise, that’s all it takes. Then there’s the “you seem fine”. And then the invisibility of the deeply dedicated management it requires. Interactions with health care providers were also discussed, where people mentioned being patient number 1, 2, 3 … when they waited for their turns. I know how it feels, when one of my previous consultant endocrinologists would come off as just wanting to get through it all and going home at the end of it all. Trust me, it isn’t the best feeling, by any definition. 

With every conversation I had, I noticed a common theme in describing health-care encounters: the need to be recognized as someone with the capacity to contribute to their “condition” in a meaningful way, i.e., active, and not passive participation. This could be in the form of engaging with their health care team or friends or family. And most importantly: engaging with themselves. All of this broadly comes under “health literacy” which is loosely defined as:

“The degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves and others.” 

Everyone I spoke to mentioned that basic health literacy should be as common as basic first aid: treating a cut, handling an epi pen or an inhaler when someone is having a seizure or an asthma attack, or helping resuscitate someone who’s collapsed on account of hypoglycemia. But it isn’t and people mentioned wanting help and / or empathy and not criticism or blame - when dealing with this (otherwise) “ignorance”:

Your sweet tooth probably caused your having diabetes”. (As told to a T1 diabetic colleague at work, whose condition is an autoimmune disorder – that is internally triggered and not caused by eating too many sweets!)

Your HbA1C is too high – what is going on with you?” (As heard by an endocrinologist)

Your readings are a mess – you have clearly been eating too much and (most likely) eating all the ‘wrong stuff’”. This was something I’ve personally been told by one of my previous endocrinologists. For the record, I am an accountant and I deal with a lot of stress at work. I love my work and pride myself on the output I produce – but stress also causes fluctuations in blood sugar readings, where I still wonder why this wasn’t considered when taking my history at those consults? And if I can be candid about it, it felt like that endocrinologist was indirectly telling me, “We've told you what to do but you're not listening so why waste our time?”. So much for inclusivity. 

 “I think if we focused more on the things that I can do and the benefits that it would give me if we did that, then I probably would have accepted it better”. (As told by a now adult, who was diagnosed as a teen). 

Several people also spoke about disengagement from health-care services; they described it as occurring in the setting of difficulty managing the condition – where poor glycemic control and subsequent contentious relationships with health-care providers seemed to precede all cases of disengagement. The downward cycle had multiple elements: 

  • An inability to master the treatment regimen and achieve glycemic control and
  • An inability to engage with health-care professionals. 

Person after person described their HCP whom they thought “talked down to them” and made them feel as if they were willfully disregarding the advice given and that poor glycemic control was a personal choice. These participants acknowledged periods of self-medicating and not monitoring their blood glucose levels: consequently, developing a suicidal / fatalistic attitude about the potential of the health complications they were now experiencing:

Kind of gave up on it after a while, became too hard, closed my eyes, didn't want to know about it”.

I’ve walked down this road; so, I know how it feels. 

Having been a T1 diabetic for over 27 years at this point, I understand that barriers to adequate and appropriate medical care are as intangible (mental health, social, etc. issues) as they are tangible (e.g., availability of medicine). How do I explain to anyone that my body suddenly and very randomly failed me on one of the most basic and necessary of processes: converting food into fuel? I was diagnosed at a very vulnerable (juvenile) age; did I truly understand what my diagnosis meant – apart from the nonstop jabs? Why did no doctor ever suggest counselling when my diabetes was diagnosed; I do recall the diagnosis as being very traumatic. 

So, yes. The physical barriers to access to necessary medical care are very huge and very real. Even if “supplies” are abundant, the sheer cost of medicines and self-testing kits and doctor visits and everything in between is colossal. But added to that equation are the more subtle barriers that come under the ambit of the “soft” part of it all. My diabetes has often felt like this roulette wheel of torture – in the backdrop of every narrative that I engaged in over the course of the past few months. 

And that is as much of a barrier to access to diabetes care as is the tangible part of it. If only people understood.