Fighting the odds: Living with type one diabetes

“Diabetes is the healthiest relationship I am in,” I tell myself countlessly on a daily basis. This is not necessarily true, but it is a goal I strive to achieve.

A daunting childhood memory I tend to withhold from my adult life is reintroducing myself as a type one diabetic to the 30 examining eyes of my peer group of other six-year-olds. Explaining what to do if I may collapse again during playtime and why it could happen. Not one person understood what I was talking about, including my teachers.

Months prior to this I was unwell, my GP diagnosed me with the flu and then a urine infection that they ensured would all pass with the right medication. Until one day I had collapsed during playtime and was rushed to A&E; I had lost a significant amount of weight, I couldn’t eat, and I was constantly in and out of the bathroom.

I was first diagnosed with type one diabetes at the tender age of six, a day which is now annually remembered by my mum and me. I came in with a blood sugar level of 55.5 (normal range is 4.0-6.0) and we were told that if my mum had brought me in any later, it was likely that I could have died. Being so young my understanding was minimal, so when the doctor gave her diagnosis and my mum instantaneously started to cry I was fearful.

Almost every injection and blood test would leave me with a lump or bruise on the tips of my fingers, arms, legs, stomach and lower back. Physically I was bruised and mentally it started my battle with depression and anxiety. It was a daily conflict and calculating the correct medication, countless hospital appointments and trips to A&E left me with a mind full of resentment and loneliness.

The first and most repetitive stage of diabetes? Hate.

Type one diabetes is a lifelong relationship we choose not to be in but somehow, we are stuck. The autoimmune condition leaves diabetics living against the odds, fighting for a life prolonged over the age of 70. An autoimmune condition is where the body’s immune system, which keeps your body safe against disease, attacks itself instead. In the case of type one diabetes, the immune system kills the insulin-producing beta cells. Meaning your body cannot produce any insulin.

The life expectancy of a type one diabetic is reduced by 20 years, with diabetes being the fifth most common reason for death in the world.

I was diagnosed in 2006, a time when technology and knowledge were marginal. Fast forward to the start of 2020 and our understanding for Type 1 is still trifling. According to DiabetesUK, only 8% of diabetics have Type 1 diabetes which may clarify why our knowledge is often dominated by those with Type 2 diabetes. It leaves us continuously questioning ‘why me?’ Nonetheless, there are no simple answers as researchers are still ambiguous about the causes of diabetes.

There are many conspiracies including the effect of significant operations prior to diagnosis and hereditary factors; both of which my mum believed were the causes of my diagnosis. But unfortunately, there is no evidence to suggest any cause; you simply cannot prevent it.

The story of every diabetic is distinctive, but the very robust word of ‘hate’ is a universal emotion shared more than once in a diabetic’s life. Growing up, many Type 1 diabetics would often sit in doctors appointments outlining how to live a long healthy life with these simple steps: eat well, take insulin. And over time it becomes very apparent that this is advised by those who are not living with the condition but are only aware of the facts. Because of course, it was, and is, far more complex than this.

Plastic model of a human brain

A model of a human brain [Unsplash: Robina Weermeijer]

A recent study conducted by PLOS medicine, the first to assess the happenings during cognitive tasks in the brains of children with Type 1 diabetes, found that the patterns displayed were similar to those with other disorders such as multiple sclerosis, ageing and ADHD. These patterns were more pronounced in children who have had type one diabetes for an extended period of time.

Senior author of the study Allan Reiss said: “The takeaway from our study is that despite a lot of attention from endocrinologists to this group of patients, and real improvements in clinical guidelines, children with diabetes are still at risk of having learning and behavioural issues that are likely associated with their disease.”

It is fair to acknowledge the hardships of those living with a Type 1 diabetic. Not only did my life change but also the lives of those around me; my mum described the day and days leading up to my diagnosis as “the scariest of her life, thinking your child could die.”

At the age of six, my entire existence became my mum’s responsibility and this is also the case with the millions of other parents across the country whose child has type one diabetes or any kind of chronic illness.

Type 1 diabetes is often associated with being genetically passed down, however, according to JDRF around 85% of people diagnosed have no family history of the condition; this means that many parents have to learn an entirely new subject.

While resources provided by the NHS are useful, they are rather limited, leaving individuals in the dark and reliant on the art of guessing a large majority of the time.

However, guessing often leads to denial. One of the many stages of diabetes during the first few years of diagnosis is that it’s comfortable to sit in a state of denial and ignorance. Ignoring tasks such as blood testing and injecting before meals, I began to live my life as a ‘normal’ person, only paying attention to my condition once a day.

This was only an issue that was occurring in my head. Often the people around me did not pay attention to whether or not I was injecting because they were so used to me not doing it, which led me to continue this pattern for years and is still a practice many young diabetics are perfecting.

Holly Lines is a 21-year-old acting student from Cheshire was diagnosed at the age of 13: “People don’t even know what Type 1 diabetes is for me and other diabetics to be comfortable enough to always do it in public.”

A teaspoon of white sugar

A spoon of white sugar [Unsplash: Sharon McCutcheon]

It is important to note that ignoring any illness can be dangerous for any individual, Type 1 diabetes is an illness that has short and long-term effects. The short-term effects include hypoglycaemia – low sugar levels which occurs when you have taken too much insulin or have not correctly planned out your dosage with your meal and blood sugar. Symptoms include dizziness, sweats, increased heartbeat, sleepiness, confusion, paleness and slurred speech.

These symptoms can often quickly be resolved with sugar – a misconception around Type 1 diabetes is that you are restricted to sugar, however, episodes of hypoglycaemia rely on sugary foods. There is a severe stage of hypoglycaemia which can result in a coma or death if sugar levels are too low and according to healthcentral.com, one in 20 people die from a severe episode of hypoglycaemia.

Diabetic Ketoacidosis is a lack of insulin in the body which most often leads to the long-term effects of diabetes. It is the most common condition that young people who do not take care of their diabetes develop. Endocrineweb.com describes it as an effect that occurs when the body runs out of insulin and therefore the glucose is not used effectively and begins to use fat to obtain its energy.

When fat is broken down, ketones are then released and begin to build up in the blood making the blood acidic leading to diabetic ketoacidosis. Symptoms of this include frequent urination, pale skin, intense thirst, weight loss and abdominal pain. The long-term effects of this are multivesicular complications in the eyes, kidneys and the heart.

Senior researcher the Center for Interdisciplinary Brain Sciences Research at Stanford University and lead author of the PLOS medicine study Lara Foland-Ross said: “Kids with diabetes have chronic swings in blood glucose levels, and glucose is important for brain development.

“The longer the exposure you have to dynamic changes in blood glucose levels, the greater the alterations in brain function.” Lara Foland-Ross

“Studies in adults with diabetes suggest that in the later stages of the disease, the brain eventually loses its ability to compensate for this problem,” she added.

In an interview with the Metro newspaper, 28-year-old, Type 1 diabetic, Harry Edmanson said: “I have also had a couple of times when people don’t believe how serious the disease is. Once when I said to someone diabetes is a life-threatening illness, they told me it wasn’t.

“When I pointed out that if I don’t take insulin, or take too much of it, the worst-case scenario is me dying they replied that I ‘wouldn’t do that’, but that doesn’t make it any less life-threatening. I find a lot of people don’t realise that Type 1 diabetes kills; they assume it’s just about eating well and doing some injections, they don’t appreciate the fine line we walk in controlling our blood sugars, or the consequences poor control brings.”

As Harry explained, we are often told “but you don’t look sick” and this is something that other sufferers of invisible illnesses likely experience too.

Not all illnesses look the same, but that doesn’t mean that they are any less important than those that are clearly visible. Issues such as this have called for a change in aspects such as the disabled sign, which advocates covert discrimination with those living with invisible illnesses.

Blue disabled sign in a parking bay

Disabilities are not always this obvious [Unsplash: AbsolutVision]

In 2017, Tottenham Hotspur became the first football club to feature ‘not all disabilities are visible’ on their disabled toilets and many supermarkets have also obtained this new feature.

I have been confronted many times for using the disabled toilets and often feel guilty using them. Often in scenarios where my sugar levels are too high or low, I have been denied access to them even when explaining I am Type 1 diabetic.

Many are in support that the new disabled signs will make it easier for those with invisible illnesses to explain their circumstance when in difficult situations. Although the condition is life-threatening when managed, people go on to live very healthily, long lives with diabetes.

Acceptance is the most desired yet the hardest to reach stage of diabetes and one that I am still struggling to come to terms with. There is a fine line between good control of diabetes and struggling to manage, there are countless small prompts that trigger high or low sugar levels and it is impossible to always have perfect diabetes due to lifestyle factors that are guaranteed to affect it.

Constant high sugar levels can often lead to mental health issues such as depression and anxiety often making you easily irritable and angry. At the tender age of 13, I was diagnosed with both conditions which led to psychiatrists prescribing me medication, which only added to my already extensive medication list.

Further to this, large amounts of insulin at a young age can increase hunger which can result in weight gain which prompted the start of my unhealthy relationship with food and led to dramatic weight fluctuations. All of these tied together has made body image a large aspect of my life for countless years. This is the case for many young Type 1 diabetics, men and women, who are living in an era of social media making the condition even harder to live with.

Celebrity awareness is especially important in terms of acceptance; individuals such as Nick Jonas have shown that it’s possible for people to be extremely successful without letting diabetes stop them. He was diagnosed in 2007 at the age of 13 and revealed that sharing his story with fans has made living with diabetes easier.

The future of diabetes seems to be promising with new technologies and better understanding being sought out every day. GoodNewsNetwork recently reported the bionic pancreas had a “breakthrough” designation from the US Food and Drug Administration, giving Type 1 diabetics a chance of medical freedom.

 

 

 


Featured image by Matt Chesin via Unsplash 

Edited by Hannah Blissett, Holly Johns & Kesia Evans.

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