Lived experience with diabetes stigma – BJ

It's not just personal - it's family too.

Being diagnosed with type 2 was a little overwhelming. Not just for me, but for my family.

I had no idea what to experience as a patient. I had no idea that the first instance of stigma would come from the health professionals. I had all sorts of information given to me by my doctor. Mainly about losing weight and exercise.

A stressful job and three young children had contributed to me placing health low on my priority. I had already felt a little shame over the weight I had gained but presented by a doctor with “your weight is just too high” didn’t help my mindset.

Telling my extended family felt like a repetitive task. Usually ending in a well-intended relative saying “well I guess you just have to watch the sweets”. South Africans love their sweets and cakes for some reason…

In the first year of dieting I lost almost 30 kilos. While I felt better, many friends and family would still ask: “How’s ya diet going?” It was hard to say: “It’s not a diet, it’s a lifestyle.”

Five years on and I was still on metformin, trying to eat well and still getting a similar result for my HbA1c. After four years, I campaigned for a referral from my GP to see an endocrinologist. My GP was reluctant, continuously saying it was weight and diet.

I was grateful to hear the endo, apologise and say: “It looks like you should have been on insulin a while ago.” It was comforting to know that I wasn’t just ‘fat’. I walked out of the office as insulin requiring.

Last year my world crumbled. A divorce and my children living in a different state. I had the chance to reflect on my health and the attitudes around me about diabetes.

In December last year I made a commitment to my health. I joined the gym again and began regular sessions with my GP. I started a plant-based diet and reduced my weight in three months. Who knew plant-based food could be so delicious!

I maintain a regular schedule at the gym to the point that those around me started labelling me a ‘gym junkie’ I had the confidence to shrug it off and explain to them how the exercise and insulin have reduced my blood glucose levels.

I still get the odd person who looks at me while eating a chocolate and says “should you really be eating that?” but I now take the time to explain it. I’ve learned that persistence in your health plan and patience with those who care about you, will help change some of the misinformed views of diabetes.

As I approach my 47th birthday in a few months, it feels natural to reflect on my journey so far. The opportunity to share my story with those who need that extra cheerleader in their corner. The progress I have made excites me and I can’t wait to look back again in 12 months.

If you are experiencing diabetes stigma, there are NDSS diabetes and emotional health factsheets, peer support groups and our advocacy team to help with social and emotional wellbeing, these are some of the handy resources available for looking after your emotional health...

You can read more about diabetes stigma on our campaign website, Think again. Let’s reduce diabetes stigma.