Blog Series: The Type 1 Diabetes Conundrum: Delving into the Complexity of Type 1 Diabetes

Welcome to Video 1 of 3 in The Type 1 Diabetes Conundrum series.

In this series, I’ll unveil what makes Type 1 diabetes complex and challenging to manage.

As parents of children diagnosed with Type 1 diabetes, we know diabetes can be demanding and that a diagnosis of Type 1 has a major impact on our lives.

In this video, I’ll introduce how Type 1 diabetes is complex - how diabetes can affect not only your child’s health but many areas of your family’s life, and how -  as a parent and caregiver - YOU carry a lot of the stress and burden.

Let me take you beyond the “ins” and “outs” of diabetes management, beyond what you see and deal with on the surface daily, and let’s have a look at the far-reaching impacts of Type 1 diabetes from a holistic perspective, uncovering the physical, psychological, emotional and financial challenges that your family may now be facing, since diabetes entered the picture.

When I began to work with families, the very first thing I did was to sit down and reflect on everything that people with Type 1 diabetes and parents and caregivers are dealing with.

Have you ever just stopped to think WHY you may find it hard to manage diabetes?

When your child was diagnosed, you suddenly found yourself in a new role, a role very few people on earth find themselves in. You’ve been tasked to do the work of an organ - to BE the pancreas for your child’s body, and you must keep your child safe at all times!

There is a lot to take in, a lot to know, and a lot to deal with.

This is your child, and the stakes are the highest. Because how you manage diabetes now sets up your child’s quality of life now and in the future.

And while the focus is on your child, as a parent and caregiver, you carry a lot of the stress. I sometimes wonder if we recognize just how complex diabetes really is.

I created this visual to help us as parents wrap our heads around the many areas of our lives that diabetes can affect.

Diabetes places substantial demands on families, and most of all, those diagnosed. These are SOME of the complexities and challenges faced by parents, caregivers, families, and those diagnosed with T1D. You might relate to some or many of these challenges.

And as you can see, it's not just complex from a human body perspective... it affects your family’s quality of life and your lifestyle. People and families with T1D can face a myriad of social, psychological, emotional, financial, and family challenges. Not to mention the complex medical system and care gap you have to navigate.

For example,

• On the social side, you might experience feelings of isolation and you or your child might feel different from friends.

When he was young, my son didn’t want anyone to know he had diabetes. He was worried people would treat him differently. And then I worried that no one would know how to help him if he needed assistance.

Many parents that I speak with are scared that they are the only one who knows how to take care of their child and that no one else know how to give insulin injections or how to react to keep their child safe.

As a fellow parent told me just this week, “You feel super alone.”

• And whether your child has just been diagnosed or you have years of experience, many parents feel overwhelmed and even powerless at times.

I remember when my son was first diagnosed. I just felt like a deer in headlights. How can this be happening? Everything felt overwhelming. After a while, it seemed that our whole family’s life was revolving around having to manage diabetes and the stress of the blood sugar rollercoaster.

• There are even studies on post-traumatic stress disorder related to the diagnoses of Type 1 diabetes: various studies on the post-traumatic stress symptoms both of children and of their parents. The fact that there’s a body of literature on this is telling.

Data from one study indicated that a clinical level of trauma is present in 66% of mothers and 65% of fathers of T1D children.

Type 1 diabetes can be far-reaching - affecting your family life, your career, even your ability to get adequate sleep.

I hope this visual helps you reflect on the reality of your situation, and I encourage you to share your feelings and challenges and talk this over with your partner, or close friend, or a trusted family member.

To be frank, I sometimes feel hesitant to show this visual, because I don’t want to make anyone feel upset or overwhelmed to see it. I personally feel it's important to see just how much is going on here.

To understand where you may be and what this might mean for you.

And this visual isn’t meant to make you feel stuck or that things are beyond your control.

You might look at this and think, yep - some of this is what life looks like right now. And you might be asking yourself:  How can I keep living life like this? And will my child inherit this once they are an adult?  How do I reduce the burden and stress?

You can start by uncovering the levers involved in managing type 1 diabetes that help you make the biggest gains.

There are 3 levers that have the greatest impact on your diabetes outcomes:

-blood glucose

-insulin

-food

When you gain knowledge and skills about the interplay between blood glucose, insulin and food, this – in turn - will have a positive, transformative flow-on effect in these other areas that T1D affects.

This is what’s key to your family’s quality of life and to you being able to help your child avoid or reduce the risk of diabetic complications. 

That's the inspiration behind my program for parents called The Nutrition Effect.

The Nutrition Effect group program is a transformative 4-week journey, unlocking the interplay between blood glucose, insulin, and food, empowering you to lead your child towards a brighter, healthier future.

I guide committed families to reflect on the reality of their situation, understand the interplay between blood glucose, insulin, and food, and create a personalized nutrition plan using Therapeutic Carbohydrate Reduction that helps to achieve normal glucose levels and nourish your child's growing body, so you can get off the blood sugar roller coaster, reduce the risk of diabetic complications, alleviate stress, and manage diabetes with more confidence.

You can find more info about the Nutrition Effect program, and to enrol, visit:

https://www.t1dnutrition.com/programs

In the next video of the Type 1 Diabetes Conundrum series, Revealing the Hidden Influences on Blood Glucose, I will shed light on the key factors that cause blood glucose excursions, plus often overlooked and hidden factors that influence blood glucose responses and affect overall health.

Stay tuned for this next video, and follow T1D Nutrition via

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Youtube: https://www.youtube.com/@t1dnutrition

or the T1D Nutrition blog!

REFERENCES FOR POST:

Schiaffini, R., Carducci, C., Cianfarani, S. et al. Post-traumatic Stress Disorder in Children Affected by Type 1 Diabetes and Their Parents. SN Compr. Clin. Med. 1, 349–353 (2019). https://doi.org/10.1007/s42399-019-0049-4