Children’s book author Dr HELEN EDWARDS has written a historical novel that draws on her own experience of being diagnosed with type 1 diabetes as a child. She shares some of her diabetes journey with us.
“I was diagnosed with type 1 diabetes at the start of 1980 when I was twelve years old. I had just finished year seven and was about to start high school, but because I was sent from our small country town to the Adelaide Children’s Hospital in the city, I missed the first two weeks of school. You can imagine my anxiety about returning, carrying this new diagnosis with me. My parents were teachers at the local area school, and my loving dad had provided my friends and teachers with some diabetes education. I just wanted to bury it deep and pretend nothing had changed. I felt alone and I felt like a freak.
I was told at diagnosis that unless I maintained perfect ‘control’ of my diabetes I would probably go blind, lose my legs, end up on dialysis and die early. I was also told I would never have children and if I dared to try, they would be born ‘deformed’ or stillborn. You can imagine the impact that had on my mental health. Today, I have three amazing sons, both my eyes, legs and kidneys in perfect condition.
Like many people, I experienced feelings of shock, anger, guilt and fear. As an older teen I neglected and rejected my diabetes and its tasks. My mental health suffered, and I began to act in ways that were out of character for me. I am sure I had depression and definitely anxiety. Eventually I made it through school and onto university, but still carried the guilt, anxiety and resentment about diabetes that had plagued me since diagnosis.
In my 46 years of life with type 1 diabetes, I have seen changes in technology from the urine tests and pork insulin of my early days to insulin pumps and CGMs, which have changed mine and so many other people’s lives. And yet, the health challenges, ups and downs, fears and emotional impact of life with diabetes remain.
There are real risks in life with type 1 diabetes, and it is a relentless and never-ending condition that often leads to the person who has it feeling like everyone else has moved on with life, and they are left standing there, carrying diabetes alone. Of course, most of us have loving families and support people, but still, it is impossible to truly know the terror of a hypo, or the anger of a high, unless you have lived it yourself.
I am now a successful and happy 58-year-old woman with three beautiful young adult sons and a wonderful husband, doing what I have wanted to do since I was a little girl – writing books. I worked as a social worker for many years and founded Diabetes Counselling Online in 2001, which I ran for 16 years. During this time, I spoke to many people with diabetes and their families and there were some common messages. Diabetes can be lonely. It is frightening. It takes away spontaneity. It isolates you. It can feel like it controls you and not the other way around. And having people around you who truly understand is invaluable.
I have been working as a full-time author for seven years now. In writing my magical historical novel Legend of the Lighthouse Moon, where the main character has type 1 diabetes, I wanted to show that despite the changes in technology, many of the emotions of diagnosis and beyond are the same. In the story, set in 1970, main character Mona McKenna has recently been diagnosed with type 1 diabetes. Like me, she lives in the country, in fact she lives in an isolated lighthouse on Kangaroo Island. This means regular trips to the city, just like I had to do, and dealing with the many changes to her life. Around her, her family seemingly get on with their lives after a time, and she is left to deal with the tasks she hates but must do to stay healthy. Her journey to feel comfortable with who she is, diabetes included, is just as important in the story as her journey to discover what has happened to her missing father and to save her beloved lighthouse and the endangered sea lion colony.
I have been using an insulin pump for about 25 years and a CGM for about eight years. It is so different to those early days. I remember that with each change – from urine tests to blood glucose machines (which were enormous and took ages!), to human insulin taken using pens, to smaller and more accurate blood glucose machines and faster insulins, and finally to pumps and CGM – I resisted change. Except for the pump. I took that on very early and have never looked back.
But despite the security and improved management that technology offers, it comes with its own challenges. A few times I have considered going back to injections but never took that step. In fact, a recent change of the sets I was using has made an enormous difference to the frustration I was feeling with pumping. I was too scared to use the Dexcom Control-IQ because I didn’t want the system making decisions. Since deciding to give it a go, I am annoyed at myself for not doing it sooner.
But those choices were mine to make.
It is always your choice to make.
These are all just tools in the management of type 1 diabetes and how you choose to manage is up to you. Whether you take breaks from different tools, blend them, change them or stick with what you know, is your choice. Whether you use pumps or pens, blood glucose machines, pumps and CGMs with all the bells and whistles, is up to you.
In 1970, in Legend of the Lighthouse Moon, Mona McKenna must choose to feel comfortable with her diabetes, to make it part of who she is, and not to fight against it. She must realise that she is herself, even with a dodgy pancreas, even with the need for insulin injections and urine tests and changes to her lifestyle. She is still Mona.
And she is worth loving.
Recently, I have been getting emails about adding the ‘bolus from your mobile’ update to my pump. I have ignored these. I am happy with where I am at. I don’t want to bolus from my phone. I am comfortable with where I’m at and who I am.
Who knows, maybe I will be sitting here in another year, telling you that yes, I am now bolusing from my mobile!
But that will be my choice to make.”
