20 years has passed since my Type 1 Diabetes diagnosis in my early teens. Today I’m not able to tell the story of how my very normal childhood turned into a 24/7 management of my blood glucose level. I simply can’t recall life pre-diabetes and I barely remember the beginning of it. I’ve tried to imagine that worry free life, where I can just be and just do and just forget. But I can’t. A constant underlying worry has become my normal. Normal to the extent that I don’t really recognize it as worrying – it’s just my normal state of being. But I do worry. I constantly pay attention. I analyze and I calculate and I correct and when I do cut myself some slack I blame myself for my mistakes. But through this daily fighting I’m also highly aware and appreciative of life and health. Holistic health. So the story I’ll tell is about how I decided to stop alienating myself from my diabetes and stopped victimizing myself for this happening to me. (Contrary to many many people’s believes – T1D happens to you, it’s a genetic autoimmune disease and has nothing to do with how much of what you eat or how little you exercise. I was a 47kg competing teenage gymnast at the time of my diagnosis).
So I had passed my 30th and kind of lived through my 20s to some extent ignoring that I had a life threatening condition that required TLC 24/7. I guess I got hit by an early mid life crisis – or rather an awakening insight of the fact that I’m not indestructible. The panic and angst that this brought face slapped me into taking action. So what did I do?
Changing mindset
I realized that to start off I needed a mindset change. I buried my old saying of – “I might have diabetes – but I AM not a diabetic”. Throughout my teens and twenties I had refused to identify as being diabetic – believing that this approach made me stronger and not reduced to “a sick person”. I purposely avoided to show others that I had diabetes. Still today there’s people whom have known me for years who are not aware of my constant fighting.
Over the past few years I’ve made big progress in this area. I’ve gradually transitioned into feeling stronger by identifying as a diabetic person and as belonging to the warm community of people living with a chronic or life threatening disease or disability. As I’ve learned to admire these super humans’ resilience and mental strength I’ve realized that I’m actually right there with them. I too am resilient and strong and admirable for not letting this limit me! If I only could have told my 17 year old me this when hiding it or pretending like it was nothing. Today being T1D is part of who I am, I’m not reduced to it – I’m stronger because of it.
Knowledge building
Another key approach was acquiring more knowledge. I’m a curious learner with unnecessarily many university credits and when moving around in the world the highest value in our shipping insurance is always the growing book section – and yet at 30 I had only read one book on diabetes – and that during the very year I was diagnosed. I was not updated with new research, technology or the latest empirical discussions. So I bought a stack of books, joined special interest groups on social media and I signed up for an online course in nutrition. Knowledge is power, right? I applied these learnings through starting to address my food habits drastically, I worked on my sleeping habits and my stress management techniques. I’ll do a segment on each topic later in this blog.
Asking for support
So we’ve got mindset change and knowledge down – the third piece after gaining some confidence was asking for support. The toughest of them all. I had never really let anyone in on my struggles and if so I had closed the door very fast – assuring anyone who cared that everything was just perfectly fine. And unfortunately I can be quite convincing.
I started with my husband, then opening up a bit to my sister and parents, then talking to some friends and my manager. Even if I didn’t engage all of them for help, I got the basis down for an awareness in my immediate circle. Then I reached out to fellow T1Ds to actually make my first friends who also had diabetes, I got myself a proper endocrinologist (as we’ve moved countries frequently I’ve always managed to do my check ups and prescriptions with different GPs, which meant no one had any actual medical history on me) and most recently I’ve signed up with a health coach who’s paid to help and to follow up on me. I’ve made myself more accountable to my results through engaging a support system around me but I’ve also made it a whole lot easier to reach out for help when I need to.
And now when I recently changed job and employer – I found suitable situations early on to share this important piece of information to my new manager, my peers and my team. For the first time in my life I wasn’t afraid of what they would think of me.
Mindset, Knowledge and Support has been my key cornerstones for starting to take a holistic approach to managing my health and minimize the risks and worries in my everyday life now as well as in my future. I believe these three fundamentally important pieces are applicable to most high maintenance diseases or disabilities and I will continue to describe them more in detail, using my experiences as the context but trying to make it relevant for a wider audience than my fellow diabetics.