Type 1 diabetes is a complex and often misunderstood condition that affects millions worldwide. In this article, I hope to demystify some of the hidden intricacies of living and caring for a person with type 1 diabetes and maybe even bust a few myths about this invisible condition!
Imagine a world where your body waged a silent, relentless war against itself. Where your own immune system blindly attacks the very cells that keep you alive. This is the reality for those living with type 1 diabetes, a complex and often misunderstood disease that affects millions worldwide.
Now I totally hold my hands up, this was me only a few years ago. But by demystifying this chronic disease, I hope that like me you can feel more empowered. This knowledge helps you to be more aware and provide the support that will make a difference in the lives of those living with type 1 diabetes.
In this article, I will explain some of the intricacies of type 1 diabetes. Looking at some of the daily challenges faced and the significance of managing blood sugar levels. I am not medically trained, but my expertise comes from being a parent who has cared for a child living with type 1 diabetes for a few years. So this is written from my perspective, collating all that I have learnt and experienced as a type 1 mum (so far!)
WHat is Type 1 Diabetes?
To truly understand the complexities of type 1 diabetes, it is crucial to grasp the basics of what this condition is .
Type 1 diabetes is an autoimmune disease that occurs when the body’s immune system mistakenly attacks and destroys the beta cells in the pancreas. These beta cells are responsible for producing insulin, a hormone that plays a vital role in regulating blood sugar levels.
Without insulin, our bodies are unable to move the energy from carbohydrates (glucose) and release the glucose from our blood cells.
So why is this a problem? If our body stores glucose in our blood cells, our glucose levels rise. If this continues over a considerable period of time it will damage nerves, blood vessels and vital organs.
Unlike Type 2 Diabetes, where your body either doesn’t make enough insulin or resists its effects, Type 1 requires lifelong insulin therapy to manage blood sugar.
Survival and day-to-day management have improved considerably due to the continued progress in medical research and technology. However, a cure for type 1 diabetes is yet to be found.
Nevertheless, I should point out that there are still many in the UK and around the globe who are unable to access advanced diabetes treatments and management tools due to lack of availability and high costs. Check out the amazing work done by T1 International.
WHat causes Type 1 Diabetes?
The exact cause of Type 1 Diabetes remains a bit of a mystery, which is amazing, considering it’s believed that the history of the condition goes as far back as the Egyptians around 1550 BC! but scientists believe it’s a two-pronged attack:
- Genetics: Having certain genes increases your susceptibility, but it’s not a guaranteed trigger. Most people with Type 1 don’t have a family history.
- Environmental Factors: These are still being researched, but viruses or other external elements might act as a trigger, pushing a genetically predisposed person towards developing the disease.
However, we do know that you DO NOT get any form of diabetes from eating too much sugar! and an important difference when understanding type 1 is:
“There are no lifestyle changes you can make to lower your risk of type 1 diabetes” (NHS. UK).
Unlike type 2 diabetes, which is often associated with lifestyle factors, type 1 diabetes is not preventable or caused by lifestyle choices. Whilst the exact cause of type 1 diabetes remains unknown, researchers believe that a combination of genetic and environmental factors may trigger its onset.
A surprising fact about Type 1 Diabetes is that it can develop at any age, not just in childhood. While often diagnosed in children and young adults, adults can also develop Type 1 Diabetes. This form is sometimes called LADA (Latent Autoimmune Diabetes in Adults). It progresses more slowly than childhood-onset Type 1, but still requires the same management strategies like insulin.
Recognising the signs of Type 1 Diabetes
Recognising and getting to the point of diagnosis is not always clear cut with type 1 diabetes. In our case, we kept wondering why our daughter was losing weight and was more lethargic than normal. I still kick myself today as to why I waited so long to call the doctors when she was so poorly. But we just didn’t connect the dots and simply put it down to a growth spurt as she was entering her teens.
Symptoms can present themselves quickly in children but there are some key signs to look out for.
Type 1 diabetes symptoms:
- Going to the toilet a lot, especially at night
- Being really thirsty
- Feeling more tired than usual
- Losing weight without trying to
- Genital itching or thrush
- Cuts and wounds take longer to heal
- Blurred eyesight
- Increased hunger
Early Diagnosis
Early diagnosis of Type 1 Diabetes is crucial. Left untreated, high blood sugar levels can lead to a serious complication called Diabetic Ketoacidosis (DKA) which requires immediate medical attention. Recognising the symptoms and seeking medical help can significantly improve your health outcomes.
If you are unsure always seek a professional like your GP, as a simple blood sugar and urine test can identify high blood glucose levels.
The Different Types of Diabetes
There are 11 different types of diabetes listed on Diabetes UK. Most people are more aware of type 2 diabetes, which, in 2021, accounted for 90% of all diabetes prevalence. (Lancet 2023).
The 11 types of Diabetes are:
- Type 1 Diabetes
- Type 2 Diabetes
- Gestational Diabetes
- Diabetes LADA
- Diabetes MODY
- Type 3c Diabetes
- Steroid Induced Diabetes
- Neonatal diabetes
- Wolfram Syndrome
- Alström Syndrome
- Cystic fibrosis diabetes
All of these different types of diabetes are unique and person-specific. Therefore they are also managed differently. By better understanding, the many types and the different ways people learn to live with diabetes, helps us to stop the generalisation and common misinformation around this condition.
Day to day management of Type 1 Diabetes
Living with type 1 diabetes presents a unique set of challenges on a daily basis. The most notable among these challenges is the need for constant blood sugar management. Since their bodies no longer produce insulin, people with type 1 diabetes must rely on external sources of insulin, such as injections or an insulin pump, to maintain stable blood sugar levels.
There are so many factors to consider when managing type 1 on a daily basis. In fact, there are over 40 things that can affect blood glucose levels from; food consumed, to activity, illness, hormones, stress and even the weather outside! Unsurprisingly this makes management tricky and sometimes we can get it wrong because we just don’t know what on earth is going on. But that’s OK!
However, to simplify this, the key measures that have to be monitored regularly throughout the day are:
- Blood Glucose Levels
- Insulin Levels
- Carbohydrate Counting
We will now look at each of these in a little more detail.
Blood Glucose Levels
It is essential that a person with diabetes measures and keeps track of their blood glucose levels. This can be done through a finger prick test or using a Continuous Glucose monitor (CGM) which is worn on the body.
This regular monitoring of blood sugar levels allows individuals to make informed decisions about their insulin dosage, diet, and physical activity to help maintain control. And thankfully diabetes technology just keeps getting better. In the UK this is now available to all people living with type 1 diabetes. This has made monitoring easier and less painful for my daughter’s fingers, however, it can be a double-edged sword in that it does become all-consuming.
Keeping in range is really hard work and can be mentally exhausting.
Keeping blood sugar levels within a target range is crucial for individuals with type 1 diabetes to maintain their health and well-being. The NHS recommendation is between 4-8 mmol/L. As a reference, a non-diabetic person’s range is between 3.5 and 5.5 mmol/L. When blood sugar levels are consistently too high or too low, it can lead to a range of complications and impact daily life in significant ways.
2 common terms used to describe these extremes in blood glucose levels are, hyperglycaemia and hypoglycaemia
Hyperglycaemia
This is when blood glucose levels are too high and above the recommended thresholds. Left untreated it can make you feel very unwell, impact concentration and you will start to have symptoms as listed above.
Hypoglycaemia
This is when blood glucose levels fall below 3.9 and will need to be treated with a fast-acting carbohydrate like sugary sweets, glucose tablets or a sugary drink. The risk, as with hyperglycaemia, if left untreated is a diabetic coma. Again there are many signs you may feel when you are experiencing a “hypo” from shaking, blurred vision, sweating, and dizziness to name but a few.
Managing blood sugar levels requires a delicate balance and constant attention. Individuals with type 1 diabetes must be vigilant about monitoring their levels and making adjustments as necessary throughout the day. It can be challenging, as factors such as stress, illness, and hormonal changes can impact blood sugar levels unpredictably. Nevertheless, by closely managing their blood sugar, individuals can help prevent immediate complications and reduce the risk of long-term health issues.
Insulin
A person with type 1 diabetes has to physically provide their body with insulin. Insulin is essential as it helps regulate the amount of glucose in the bloodstream, allowing cells to absorb and use it for energy. For many individuals, this involves multiple daily injections or using an insulin pump.
How this is managed, the quantities of insulin needed and delivered are totally unique to every type 1 individual.
In our case, my daughter moved from daily injections (which were easily 10 plus a day) to an insulin pump. This then delivers the insulin requirements through a tube that is connected via a small cannula in her stomach. with more delivery mechanisms available for a person with type 1, it’s about figuring out what suits that individual best.
Individuals with type 1 diabetes must be vigilant about monitoring their insulin levels, considering any movement/exercise after insulin has been delivered and making adjustments as necessary throughout the day.
Carbohydrate Counting
“Knowing how many carbs you’re eating and drinking helps you manage your blood glucose levels by matching your insulin dose to the amount of carbs in your meals and snacks.” (NHS.UK)
However not all carbs are the same, we all respond differently to different types of carbohydrates which can make this task particularly challenging. Read my article all about Carbohydrates to learn more about them:
Carbohydrates 101 – Facts about Carbs
Carbohydrates 101: Empower yourself with knowledge and facts about carbs, their impact on blood sugar regulation, and living with type 1 diabetes.
WHy is Diabetic Carb Counting important?
Diabetic carb counting is a fundamental strategy for people with Type 1 Diabetes to manage their blood sugar levels effectively. It involves calculating the amount of carbohydrates (carbs) in your food and then taking the appropriate dose of insulin to cover those carbs.
Here’s why carb counting is important:
- Precise Insulin Dosing: Carbs are the primary dietary factor influencing blood sugar levels. By knowing the amount of carbs you consume, you can adjust your insulin dose accordingly, leading to better blood sugar control. This precision helps to prevent both high blood sugar spikes and dangerous drops.
- Flexibility and Freedom: Carb counting empowers you to make informed choices about your meals and snacks. You can enjoy a wider variety of foods while still managing your diabetes. This eliminates the need for rigid meal plans and allows for more spontaneity and personalisation in your diet.
- Improved Health Outcomes: Effective blood sugar control reduces the risk of long-term complications associated with diabetes, such as heart disease, nerve damage, and vision problems. By managing your blood sugar levels with carb counting, you can improve your overall health and well-being.
My article below explains Carb counting in more detail and is full of helpful, practical tips!
MASTERING CARB COUNTING: A TYPE 1 MUM’S GUIDE
Master Carb Counting with Confidence! Discover why it’s crucial, learn practical techniques, and refine your skills to accurately count carbs for better diabetes management.
Living Well with Type 1 Diabetes
While Type 1 Diabetes requires daily management, it absolutely doesn’t have to define your life. With advancements in technology and a commitment to healthy habits, many individuals with Type 1 are thriving and achieving amazing things. Check out Type 1 Stars from sports, music, TV and more for inspiration.
Embrace Technology – Continuous Glucose Monitors (CGMs) and insulin pumps offer incredible tools for real-time blood sugar monitoring and precise insulin delivery. These technological advancements empower you to take control and optimise your diabetes management. And we are incredibly fortunate in the UK to have this supported and implemented within the NHS.
The Power of Community – This point I can’t reiterate enough. You’re not alone on this journey. There’s a vast and supportive community of people with Type 1 Diabetes. From online forums, social media groups, local support networks and me here at WHK, who provide valuable resources, shared experiences, and encouragement.
Living well with Type 1 Diabetes involves a proactive approach. Remember, numerous resources are available to help you on your journey. Talk to your doctor and diabetes team about the latest treatment options and create a personalised management plan. Connect with support groups and online communities to learn from others and share your experiences. With dedication and a positive outlook, you can achieve optimal health and live a fulfilling life with Type 1 Diabetes.
Read more about Our diabetes Toolkit which supports our day to day management of living with type 1 in the article below:
Our Diabetes Management Toolkit
Living with and/or caring for a person with type 1 diabetes is demanding, which is why it’s so important to create a diabetes management toolkit that can help you every day.
Thriving with Type 1 Diabetes – You’ve Got This!
Understanding the basics of type 1 diabetes is the first step in demystifying this complex condition. The meticulous management of type 1 diabetes is demanding and time-consuming. It requires constant attention and a commitment to self-care. But by appreciating the constant effort required creates the opportunity to further empathise with the daily challenges faced.
But remember, how a person living with type 1 diabetes chooses to manage their condition is totally individual. It is not a one size fits all.
As with many invisible conditions and illnesses, a person caring for or living with type 1 can feel frustration, guilt, exhaustion and embarrassment to name but a few of the emotions. So next time someone tells you that they are living with type 1 diabetes, maybe show them some compassion and share what you have learnt in this article. But most importantly listen to them, as they are by far the experts in their own condition.
Sources
DiMeglio, L. A., Evans-Molina, C., & Oram, R. A. (2018). Type 1 diabetes. The Lancet, 391(10138), 2449–2462. doi:10.1016/s0140-6736(18)31320-5
www.diabetes.co.uk/diabetes-history
www.nhs.uk/conditions/diabetes
www.diabetes.org.uk/diabetes-the-basics/diabetes-symptoms
www.diabetes.co.uk/diet/carbohydrate-counting.html
Type 1 Diabetes in children, adolescents and young adults, 7th edition by Dr Ragnar Hanas
www.nwpc.com/supporting-people-with-invisible-illness/
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