Type 1 diabetes patient and postdoctoral research fellow, Thea de Gruchy, shares why she chose to become a Diabetes South Africa volunteer.
I was diagnosed with Type 1 diabetes on 26 December 1999. While the rest of the world was waiting to see what Y2K would mean for computers and alarm clocks, my family was anxiously trying to figure out how to adapt to life with a diabetic eight-year-old. My prevailing memory from this time was looking intently at the front pocket of my doctor’s coat, knowing that there was a lollipop in there and not quite understanding why I wasn’t getting it.
Since being diagnosed, I’ve had a lot of experiences that I’m sure people with diabetes all over the world share. The insulin pump rep who took the battery out of my pump even after I told her that whenever I took the battery out the whole pump resets, and who was then surprised when the whole pump reset.
The new GP I went to for a throat infection who told me my HbA1C wasn’t good enough, and then admitted that he hadn’t seen a patient with diabetes since the 90s.
The friend of a friend who told me not to eat a very delicious looking piece of cake at a birthday party. The barrage of messages every time there’s a newspaper article that talks about a ‘cure’ for Type 1 diabetes.
Limited access of care
Although I don’t believe the ‘there will be a cure in five years narrative’, I do feel incredibly lucky to be diabetic at a point in history where there are sufficient pharmacological and technological developments that enable me to live and enjoy a good quality of life. But I also know that although insulin has been around for 100 years, access to it, and other life-saving and life-improving tech and medicine, is limited to just a few of us.
Barriers to healthcare, in addition to the narratives around ‘deservingness’ that often permeate conversations about diabetes and terms like ‘co-morbidity’ or ‘underlying health conditions’ that have served to explain away the deaths of people with diabetes during the pandemic, are all completely unacceptable, but all completely accepted as part of how society operates and thinks about illness.
Pandemic has made me feel ‘diabetic’
Reflecting on her experiences with cancer, Susan Sontag famously wrote, “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” (Sontag, Illness as metaphor, 2002)
I’ve just turned thirty. So, I’ve now lived in the ‘kingdom of the sick’ for a lot longer than I ever lived in the ‘kingdom of the well.’ For most of my life, however, I’ve always understood myself as being well or healthy, just having diabetes. It’s only been more recently that I’ve started to understand that I don’t just live with diabetes as an added extra (another item on my to do list). But rather that diabetes is all-encompassing; an integral part of my life that affects everything I do, and which is affected by everything I do. Trying to get through the last two years of the pandemic has definitely made me feel diabetic in a way that nothing has before.
Offering help to DSA
This feeling prompted me to reach out to Diabetes South Africa (DSA) in early 2021 and ask if I could be of assistance in anyway. I reckoned that if I was feeling isolated and frustrated, others would be to, and I wanted to know if there was anything I could do.
People living with chronic illnesses, specifically diabetes, are often referred to as ‘patient experts’ in recognition of the amount of expertise and agency that goes into living with a chronic disease on a day-to-day basis. I was interested to know if there was anything I could do as both a patient expert and someone with professional expertise in understanding barriers to healthcare in South Africa. And I’m so glad that I did. I’m learning so much about diabetes and people living with diabetes in South Africa and supporting an organisation like DSA feels increasingly important in the current context.
Living with diabetes has definitely become a more important part of my identity as I’ve grown up. Learning to accept that diabetes does in fact define me and does create limitations has been an important step is figuring out how to live the life I want to and do the things I want to do with diabetes. Except for eating pizza. I gave up on that fight a long time ago.
Instead of seeing the things I do as a person with diabetes as a chore, I try (although not always successfully I must add) to see opting out of pizza, needing extra sleep or extra time to recover from a run, ensuring I always have extra meals in the freezer as reminders that “The fight is still going on, and I am still a part of it.” (Lorde, Cancer Journals, 2020).