First Person

Type one diabetics are misunderstood – the consequences are deadly

Read by Wardah Thanvi.

On a cool winter’s day in 2008, I took a chocolate chip cookie deliberately placed beyond my reach. I was a mischievous eight-year-old, full of energy and happiness. Life was great. I ate, laughed, and played what I liked, whenever I liked. A few sleeps away from Christmas, puffy snow layered the streets outside. I was excited. A few hours later, my life changed forever. 

And I don’t mean being diagnosed with a life-threatening autoimmune disease. My diagnosis of type one diabetes didn’t itself herald the end of something better. My dreams are still reachable, my ability to access them no less tainted. But the misconceptions surrounding type one diabetes, and the lack of understanding of the inherent differences between type one and two, has had a profoundly harmful psychological impact. Type one diabetes challenges me in more ways than one, but it is far from soul-destroying. On the contrary, it has enabled a unique opportunity to learn more about myself, my strengths and my weaknesses. The challenges for diabetics are not solely related to blood sugar control and conscious eating but instead concern the impact of the disease on mental health. 

Let’s be blunt: diabetics are heavily misunderstood. The stereotype asserts that we’re either overweight or foolishly causing the demise of our physical health. Sugar is banned, and carbs are bad. Thus, eliminating carbohydrates from the diet of a diabetic seems highly appropriate. 

Actually, this is far from the truth. Type one diabetics require carbohydrates to survive. They are arguably the most important nutrient in allowing diabetics to live ordinary lives. When my blood sugars drop, carbohydrates become the only medicine to save me from falling unconscious. The carbohydrates that I consume allow me to keep adequate control of my blood sugar levels, to maintain stability and to mitigate the dangers associated with poor control. 

Needless to say, the media representation of diabetics that centres on anti-fatness has only furthered the undervaluation of the necessity of carbohydrates. Whilst there is a clear link between obesity and the onset of type two diabetes, this link does not exist in the case of type one. All diabetics are faced with the challenge of needing to be mindful of their carbohydrate consumption. But when the two types of diabetes are conflated, confusion arises. The diagnosis of type one happens without explanation. It is not only unpredictable but neither diet nor exercise plays a role in its development. 

Consuming too much sugar does not increase your likelihood of diagnosis. Type one diabetics can still eat sugar and maintain good health, provided they do so responsibly. During digestion, carbohydrates are broken down into glucose. My pancreas doesn’t work, meaning that every carb I eat must be counted and offset with the manual administration of insulin. For most people, insulin is produced by the pancreas to help our liver absorb sugar from our blood thus reducing the sugar levels in the bloodstream. But for type one diabetics this doesn’t happen automatically, so I must administer insulin myself. This doesn’t mean that I can’t enjoy pasta and sherberts. What it does mean is that I must be mindful of not only what but also when I eat. Consistent eating generally allows me to keep my blood sugar levels stable, avoiding extremes of high and low that have a unique set of symptoms but both cause disorientation. 

Why does this matter? Diabetics around the world are taught to resent carbohydrates. In Australia, type one diabetics are three times more likely to develop an eating disorder than other Australians, a condition known colloquially as ‘diabulimia.’ Without insulin to compensate for the uptick in glucose levels, the human body dispenses glucose through urine. Vulnerable diabetics avoid taking insulin doses as a means of reducing the absorption of glucose by the body, with potentially catastrophic results. Whilst diabetes does not cause eating disorders, the misunderstanding over the dietary requirements of type one diabetics hardly helps. Far from being dangerous, carbs are actually life-saving. When my blood sugars drop, carbohydrates become my only medicine to avoid falling unconscious. 

The confusion also relates to health concerns in the context of the Coronavirus pandemic. Are diabetics more likely to develop the coronavirus? Are we more likely to die from it? No. Absolutely not. However, research has shown that having a high HbA1c (a person’s average blood sugar measure over a two to three month period) can increase your risk of developing serious complications from the virus. Therefore, diabetics are strongly encouraged to work with their local healthcare team before vaccination to help control blood glucose levels. So the smash-and-grab headlines earlier last year that suggested diabetics were at greater risk of coronavirus are false. Hopefully, this knowledge calms the waters for many type one diabetics and their families. 

Honesty matters. Type one diabetes challenges me every day. I dislike its power and find that it restricts my enjoyment of the great pleasures of life. My punch bag is well used. But these challenges are nothing compared to the challenge of being misunderstood. 

Thankfully, the solution is simple: education. We need more healthcare workers challenging the harmful, inaccurate portrayal of the diabetic community. We need to hear more from the young people who come face to face with such inaccuracies every day. We also need to develop greater trust in our bodies. We must accept that our bodies will have good days and bad days, but we must protect them from the onslaught of society’s misconceptions. We all make mistakes, but the greatest mistake is to lose faith in honesty and reason. We must educate ourselves, listen to our diabetic peers, read the media with a critical eye, and challenge ableist ideas spread across the news. 

Type one diabetics don’t want your pity, nor do we want you to believe that our battle outweighs any other. I define myself as a human being. My diabetes is part of what, rather than who I am. My struggle is often more of a struggle of the mind than a physical battle. Diabetes is a niggling, insidious bully always waiting in the wings, threatening to take control of my life. I defend myself with patience and optimism. The future is bright. A cure is close. 

As I’m writing, I have fuzzy vision and shaky hands, both symptoms of low blood sugar. I must always be prepared for the unexpected, but with the support of continuous technological advancements as well as my wonderful friends and family, my dreams are still attainable. Right now, I need glucose. Then, I’ll crack on.

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