After living with type 1 diabetes for thirty years, one would think ownership is not the issue that stops one in their tracks. But it has for me today on my 30th Diaversary.
When I was diagnosed it was assumed to be my parent’s responsibility. The paediatricians, diabetes educators, dieticians and school staff only spoke to my parents. The pathology results were communicated to my parents, even though the blood was drawn from my arm and I knew why. My parents were asked for my log books or food diaries, even though I was the one who painstakingly recorded what I ate and ruled the lines between the dots on the blood glucose level graphs. My parents were asked how I was, even though I was the one feeling the emotions and living the experiences. The teachers at school would ring my Mum if there was a birthday to celebrate, even though I knew how to substitute an exchange in my lunch box for a slice of cake.
I am employed by a diabetes organisation, I voluntarily run an online community for people living with diabetes and I live with type 1 diabetes. There are very few places in my life where diabetes doesn’t present itself, whether I want it to or not. This gets confusing and exhausting and I am constantly questioning my value. I have had trouble ascertaining whether I am good at my job and my volunteer work because I have type 1 diabetes, or because I have studied in the appropriate areas and have a good set of skills and abilities well suited to these roles. I am not sure whether people want to befriend me because they assume, “I get life with diabetes” and that feels safe for them, or because they are attracted to me as a person and want to get to know me.
I have ended up feeling used for the chronic condition I live with every day. What has been viewed by others as an asset is the very thing that has the power to make me crumble at the knees out of defeat and isolation. Type 1 diabetes steals time from my life by crippling me with episodes of hypoglycaemia and hyperglycaemia. It depresses me with thoughts of my long term health prospect. I feel paralysed and unable to express myself or share my experiences due to the fear of being judged or offending others.
I have unknowingly been giving my power away.
At times I have fantasised about running a pilot version of my life during which I was never diagnosed with diabetes just to see what might be different. How life would feel: living free of diabetes. My profession, my friendships and my hobbies: what would they be without the influence of diabetes? Then I come back down to earth and realise that I actually can, (to a certain degree) live this way with the power of reframing my perspective.
I am going to claim back my diabetes.
Health professionals have influence over what management regimen I use. The federal government, the Therapeutic Goods Administration and pharmaceutical companies have dictated which drugs and equipment I have access to and how I can use them. For a long time I have accepted this and acted accordingly. I will always have respect for their expertise and the processes they administer, whether they act on my behalf or not. But they don’t own my diabetes or my health. I do.
With the guidance and support from my tribe, my endocrinologist, and my manager at work, I have made some monumental changes to the way I manage my type 1 diabetes emotionally, clinically and professionally. For the first time in my life I am not white-knuckling it through with blind hope that the results from the latest change will stick and I can eventually relax. I am relaxed and I finally feel like what I am doing, and more importantly how I am doing it, is permanent. I feel a sense of pride when I reflect on how I have made changes that are yielding results I have only ever dreamed of achieving in the past. I am achieving health goals, accessing technology, managing the conflict of interest a person living with diabetes encounters when they work and volunteer in diabetes, and most of all the stress is slowly but surely evaporating.
I own my diabetes. I may run out of breath every now and again for the effort it takes, but I have stamina and I plan to be doing all of this well, and for a very long time.