‘You have brittle diabetes,’ the diabetes educator told me, regret in her voice.
Brittle. It’s such a sharp sounding word – all edges to cut yourself upon.
I first heard the term ‘brittle diabetes’ about three years after I was diagnosed. It was handed to me as a grave diagnosis within a diagnosis. Not just diabetes for me. I had brittle diabetes. I heard it, thought about it, said the words a few time together, jarring at the sound.
I was given this ‘diagnosis’ during a really rough period. My diabetes was all over the place thanks to a totally unrelated stomach issue. There were thoughts it may have been gastroparesis or, for a moment there, thanks to the significant weight loss I was experiencing, an eating disorder.
I became terrified to eat because every time I did, I was in extreme pain. At times I threw up everything I ate, other times I didn’t. My blood sugars were all over the place and the delightful insulin regimen which at the time involved Protophane was incredibly hopeless at doing anything other than send me plummeting low, or sky-rocketing high. It was a very tough few months.
I was seeing doctor after doctor after doctor. And all anyone could think about was my diabetes. My brittle diabetes. I was told: ‘This is what your diabetes is like. Sometimes there are no answers and we can do nothing to better manage things. This is it for you.’ There was an undertone of ‘get used to it, love’.
I wasn’t prepared to just accept it though. I wanted to have a baby and I knew that there was no way that I could even consider going down that path while my health was all over the place.
I finally sacked all the health professionals I was working with and sought out someone – something – else. I refused to believe that this was how I was going to be forever. I knew there were answers; I just didn’t know how to find them.
I found a new endo and when I walked in I told her that I had brittle diabetes. ‘I can’t be fixed, apparently. Give me everything you’ve got!’ I thought silently.
‘I don’t like that term,’ she told me gently. She wasn’t rude about it; she just explained that she thought we could work out why things weren’t going so well. And then, she went about finding answers. And we found them.
It took time and it took a lot of thinking outside of the square. It took putting diabetes to the side and not thinking that it was the only reason for all my health problems. Once I got sorted and my stomach was sorted and I spent some time talking things through, my diabetes was much easier to manage. I know that a big part of getting through was not only addressing the physical side of things. There were mental health issues I needed to address, mostly dealing with the grief I was experiencing about having to let go of my life before diabetes.
I too came to not like the term ‘brittle diabetes’. When I hear it now, I want to ask what else is going on. And I can’t help wonder where I would be now if I had just accepted that as my lot in diabetes.