Jane

What diabetes stigma means to me

When I contemplate whether I have suffered from stigma during my life with diabetes, I honestly have no idea how to answer. Stigma is a negative term but I am sure that most people don’t even realise when they are stigmatising others.

I kind of understand why people do stigmatise others (but not in a nasty way). I think it can just be a case of self-preservation. If you see or read about someone living with the same condition as you but they are dealing with the complications of that condition, I think it is quite natural to think ‘oh they must not have looked after themselves as well as I have’. This is just a way of reassuring yourself that it happens to ‘other people’ but won’t happen to you. I understand that. But please know that your assumptions may be completely incorrect.

I certainly know however, that the stigma, guilt and self-blame I put on myself is never-ending and completely debilitating. But I can’t say for sure whether the people around me (health professionals, colleagues, family and friends) look at me that way. I certainly imagine that they do but I am aware that this may just be me seeing stigma and pity where there is none.

Living with the emotional burden of diabetes complications is almost as tough as living with the actual physical outcomes. From the moment I was diagnosed with diabetes 40+ years ago, I was told that if I looked after myself, I would be okay. My take-out from that? I wasn’t okay, therefore it must be my fault. I must have done something wrong. Simple.

So for the past 25 years as my poker hand of diabetes-related complications has almost reached a full-house, I have assumed it is my fault and therefore I have to ‘suck it up’ and live with it. Don’t complain; I must have brought it on myself.

I see, feel and read the judgement everywhere. Sometimes I can deal with it and recognise that it is probably just me putting words and thoughts into other people’s minds but sometimes it can bring me completely undone. I can’t even articulate what stigma and blame – imagined or otherwise – do to your self-confidence.

Stigma can come from a lack of understanding. From a distance, diabetes can appear quite simple. You have diabetes, you take insulin, you watch what you eat, problem solved. Without the knowledge of how tough diabetes can be, it is an easy thing to think that complications are a result of not trying hard enough.

Diabetes Victoria works to support people to ‘live well’ with diabetes. I have not ‘lived well’ with diabetes. Diabetes has changed the life I wanted to l live. I love seeing so many people who have lived and are living wonderful lives with diabetes but it is a constant reminder of my ‘failings’ – my word, no-one else’s. I try hard not to be the ‘what if’ warning amongst the people I know with diabetes. Whether these people are blaming me silently, I’ll never know. And it doesn’t really matter I guess. I feel it, therefore it is.

We are all doing our best so try to be kind to people who may not seem to be doing it as well as you are. Take it from me, we are punishing ourselves enough without other people adding to it.

Simon

Nineteen years ago, a GP looked grimly at his heavily overweight, sweating, grumpy patient there to get a diagnosis for what was ailing him. “I think you might have type two diabetes,” he said. At least that is what I heard. Looking back, I think I just chose to hear ‘might’.

I doubt my GP (and yes, he is still my GP) actually said that. But nonetheless it was a less than certain conversation resulting in a referral to a diabetes nurse educator the following week for advice and confirmation. The nurse was of the ‘shock and awe’ brigade. Apparently, I was going to die, and pretty much straight away unless I followed her prescription to the letter. Loud threats of immediate hospitalisation (I drank two cans of coke on my walk to her clinic), amputations, blindness and heart failure was not really the best way to get me to listen.

Grumpiness turned into incandescence. But heck, I did storm out at least convinced that I was, as I described myself thereafter for a while, a type two diabetic. Calming down, I knew I wanted to take control of my narrative back from Nurse Troll. I was a career manager of not-for-profits. So, my first act was instinctual.

That very afternoon I joined Diabetes Victoria. But it takes time to take control and make yourself the responsible person, the manager of your own health, doesn’t it?

I remember at the end of that first year back in 2002 hiding my disease because folk tiresomely gathered to tell me I had brought it upon myself (an idea I was still grappling with) and whispering requests for the diabetic option at the many lunches my not-for-profit work seemed to entail.

I learned that many, many, of the people I ‘networked’ with in those days were living furtively with diabetes and its complications. Stigma had silenced them. I wanted to live happily and healthily, though - so I needed to find another way to live with diabetes.

I read. I actively searched for studies and trials to participate in at universities, hospitals, health centres and Diabetes Victoria. There are so many good people out there who are on our side and looking to find ways make our lives better (and longer). This helped restore confidence and gave me a capacity to start to acknowledge and talk about living with diabetes. I also gained knowledge, tools and skills needed to self-manage.

I am fortunate. I am still far from being the ‘better me’ I’d like to be. But at least I have the confidence and capacity to keep working at it. Our community needs to keep fighting to ensure that everyone living with diabetes has access to the opportunities I have been able to grasp and benefit from. Anyways, enough of that. I am off to buy a potato cake and dim sim for lunch.

Jacqui

Time for stigma to end

It’s the time you hover over the ‘do you have a disability?’ question on an online job application, wondering if saying yes will be subconsciously held against you.

It’s the time you sit, sweating and vague in a meeting, trying desperately to hold out for the last ten minutes so you don’t miss out or be seen to be lacking commitment.

It’s the time you subtly cover the front of your blood glucose meter, so people don’t see if your results aren’t perfect.

It’s the time someone whose second cousin, twice removed had diabetes feels qualified to offer unsolicited advice, as if you’re not already doing the absolute best you can.

It’s the time you get your best HbA1c in years, but your endo wants to interrogate you on why you had a reading of 14.0 approximately two months, three weeks and four days ago.

It’s the time a complete stranger at the tram stop asks why you’re drinking a diet coke over a regular, and when you explain you’re diabetic, he says ‘but you’re not that fat’ (true story).

It’s the time you feel eyes tracking you as you leave the disabled toilets, having needed the room and sink space to change your pump reservoir.

It’s the time you spent 45 minutes crying on the phone to tech support while they politely interrogate you to try find out what you’ve ‘done wrong’ to make your horrifically expensive CGM not do the job it’s meant to.

It’s the time you’re made to feel greedy negotiating for a higher salary, because you know diabetes has a lifetime cost of about $150k – and that’s without any complications.

It’s the time you feel guilty for getting your COVID-19 vaccine before aged and disability care residents, because really, ‘you’re not THAT sick, are you?’.

But most of all, it’s the time you realise how much energy you’ve wasted worrying about what people say or think. Because mostly, they’re not thinking it at all, or are genuinely just trying to help. And if they aren’t? Well, they’re hardly worth your time at all.

BJ

In my late 30s I would have expected some ailments to start creeping into my body but had no idea I would be facing a lifelong change.

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.

Gabrielle

After being diagnosed with type 1 diabetes when I was five years old, it was probably another 10 years before I felt a sense of stigma associated with this autoimmune disease. Initially attending primary school, I remember a few of my classmates telling me they wished they had diabetes when I would get to eat jelly beans in class if I was having a hypo. As such, I thought having diabetes was pretty unique and cool.

The social pressures and difficulties of being a teenager was definitely a turning point in regards to my attitude towards diabetes. On reflection, I realised it was during my teens that I started trying to minimise the observable impact diabetes had on my life, and limit the chances that people would see what I was doing. I would do my insulin injections through my clothes at school, and on numerous occasions finger pricks in the bathroom. I just wanted to ‘fit in’ and ‘feel normal’, however was aware that many people associate diabetes with obesity, lack of exercise and an unhealthy diet. I struggled with both my own individual judgement of myself, as well as stigma within the community.

After completing high school, I went on to study a Bachelor of Nursing/Midwifery at university. I thought finally I would be surrounded by individuals who were educated to properly understand what having diabetes meant. Unfortunately this was not my experience. I have had colleagues say to me “Oh, you’re a diabetic…you must have to really watch what you eat” or “Don’t you think you should eat something else?” in the tea room. In handover I have heard professionals say “She must be sneaking chocolate or something for her sugars to be that high” and “it can’t be that hard to manage if you eat well”. While at the time I have tried to educate individuals and help them better understand this condition, I also feel like it is an uphill battle.

I think studying healthcare, attending placements and now working in a health profession has opened my eyes to the fact that the stigma and judgement of having diabetes is so totally engrained in society. As sad as it sounds, I think to some degree you just have to learn to live with it.

Shannon

Growing up with type 1 diabetes, I received constant reminders of the numbers I should be striving for. Whether it be the blood glucose reading on my meter, my weight on the scale, my HbA1c, doing my best to count carbohydrate grams in every meal or snack I ate – numbers seemed to define me. I recall often feeling a sense of failure and shame around my body and my diabetes management when I was not achieving ‘ideal numbers’.

It is easy to be consumed by numbers living with type 1 diabetes. Monitoring blood glucose levels all day, every day. Because diabetes is invisible, there is often a misconception that it is as simple as taking insulin and eating (or not eating) certain foods, but this is far from true. People living with type 1 diabetes make between 180 - 300 extra decisions each day to navigate their blood glucose levels. Whenever I want to eat, exercise, sleep, drive - do anything in fact - many, often complex, calculations and decisions need to be made. It can also be very unpredictable - so what worked yesterday with my insulin doses and management strategy may not work today, as there are many things impacting my blood glucose levels that I am unaware of.

For many years I did not make space for diabetes in my life, I tried my best to avoid dealing with the daily highs and lows (both literally and figuratively speaking!) but, of course, running away from diabetes did not serve me and eventually I knew things needed to change, so I reached out for support. What I have learned since then and continue to work on each day, is to not let numbers define me and know that doing my best is always enough. I have learnt to make space around the numbers, because while they provide me with important information, there are many more meaningful and important things in my life. Like being present with my friends and family, singing, eating foods that I love and moving my body in ways that bring me joy.

I am very proud of who I am and the incredible things I have achieved these past 33 years, with diabetes along for the ride. I have travelled solo overseas many times, lived in different states and countries, performed on stage in musical theatre productions and bands, completed many years of study to now be working in a wonderful role at Diabetes Victoria!

Although I know managing diabetes will never be easy, every day it provides me with a unique opportunity to grow stronger, wiser, more compassionate, and I am grateful for that. Not to mention the amazing diabetes community I am connecting with! If you are living with any type of diabetes, I want you to know how amazing you are, rising to the challenges you face each day. We are so much more than our diabetes and those numbers, we are stronger than we know, and we are in this together.