If people knew how that comment made you feel, how many decisions you have to make in a day, or how important it is to see the ‘you’ beyond your diabetes, it could make a huge difference. So this #WorldDiabetesDay, will you help us raise the voices of the diabetes community?
We are highlighting stories from people with diabetes to raise awareness of life with diabetes and the impact of diabetes stigma and start to change the mindset.
Diabetes is a complex and serious condition, and oversimplifying what it means to live with diabetes – and why it develops – can contribute to harmful stigma. This is just the start of our conversation about stigma and these are just a few voices from the diabetes community.
Find out more about what we’re doing to better understand and tackle diabetes stigma, and sign up to join our community and keep updated with our work.
Amelia, lives with type 1 diabetes
"I wish people knew about the mental burden of living with type 1 diabetes. People assume that you check your blood sugars now and then, and you inject insulin a couple of times a day and apart from that you’re fine. But type 1 diabetes isn’t like that; it’s 24/7 and I’m constantly checking my blood sugars, and assessing, ‘can I go for that walk’ or ‘can I eat something’, or ‘how much insulin do I need now if I’m going to do some exercise later’ - it’s relentless. And because I may be reluctant to make a fuss, people just don’t understand the never-endingness of it."
Nicki, lives with type 2 diabetes
"As time has gone on I’ve become more confident in my knowledge about diabetes, because my diagnosis was so out of the blue and so it was a steep learning curve for me. So I do feel justified in challenging people when they clearly don’t have the right understanding about the condition."
Bethany, lives with type 1 diabetes
“I feel like there’s a lot of stigma about how people look when it comes to diabetes. Everyone expects type 1s to be skinny and type 2s to be overweight, and because I didn’t look like anyone’s idea of someone with type 1 I didn’t get the right diagnosis. People tend to get put in boxes or labelled with things that really aren’t true at all.”
“9 in 10 people living with diabetes have come across myths and misconceptions surrounding the condition. These tend to be the same whether the person is living with type 1 or type 2 diabetes, with a few exceptions.”
Fatmata, lives with type 1 diabetes
“If you knew...that when I was first diagnosed with type 1 diabetes, I was only 23 and I thought that diabetes only affected much older people, and believed all the stereotypes of who could get diabetes until I did my research and found that wasn‘t the case. I went from living my normal life to having it turned upside down, to the realisation that my diabetes would be a life-long condition, when I thought I would just be given some tablets and my diabetes would go away.”
Abdul, lives with type 2 diabetes
“If you knew...there are cultural, religious and language barriers, particularly among the older generation, in South Asian communities. Talking amongst friends and family and other groups in my community, I discovered there was a huge lack of understanding about diabetes. It was regarded as something casual, as something everyone has and therefore it’s ok. There was also a lot of suspicion around the treatments for diabetes.”
“Almost half of people living with diabetes told us they believe diabetes limits what they can do.”
Daniel, living with type 1 diabetes
“If you knew... the mental and emotional toll that living with diabetes has on us, then you wouldn’t think that living with diabetes is easy or pass judgement on us and the challenges we face every single day. The only place where living with diabetes is easy is on paper - nowhere else.”
George, lives with type 1 diabetes
“If you knew...that I’m very upfront about my diabetes, and always tell new colleagues at work. I don’t let my diabetes dictate my life – I plan and set aside 10 minutes every morning to make sure I have everything I could need for the day, a spare sensor, a couple extra vials of insulin, needles, etc.
"Planning is very important – I've adapted to living positively with my diabetes. One thing that really struck me when I was diagnosed was the stigma and misconceptions surrounding all types of diabetes. My hope is that we can dispel the myths and educate people further about all types of diabetes.”
Robert, who lives with type 1 diabetes
“If you knew...that I can’t just grab my keys and leave the house, I need to be prepared for any high and low and need a bag full of provisions to accommodate."
1 in 4 people with diabetes told us they experience stigma in the home at least weekly.
"Well, when I was diagnosed in 1999, my mother was very conscious and aware of people gossiping and stuff. So she and myself we've been shielding from my dad's side of the family. So we haven't at the moment, to this day, after 23 years of living with diabetes, we haven't officially told relatives and cousins and aunts on my dad's side that I’m Type 1 diabetic and no one knows about my niece having diabetes as well." Anonymous male.
“I didn’t realise how much my sister’s family judged me until they came round, and told me I should walk more. They went off on one I had to leave the table and go upstairs, and I haven’t spoken to them since.” Female, living with type 2, anonymous.
"If you knew... that sometimes I feel like my friends don’t believe me when I’m having a hypo. They think I’m looking for an excuse to have a chocolate bar. They give me funny looks.“ Female, living with type 2 diabetes.
“My aunt said, ‘Stop crying, you’re only doing it for attention’. She thinks that’s what I’m doing with the diabetes too, crying for attention.” Female, living with type 2 diabetes.
“My family make plans around my diabetes, without even asking me. They say things like, we were going to have pasta, but then we remembered you, so we’re doing grilled chicken instead.” Anonymous female, living with type 1 diabetes, aged 30.
“My family will say, 'do you have to do that right now', when my insulin alarm goes off. Urm...yes! It’s important!" Anonymous, living with type 1.
"Mum’s wish is to ‘cure’ me of my diabetes. She keeps suggesting home remedies like bitter gourd (‘karela’ in Gujerati) to counter the sugar." Anonymous.
1 in 5 people told us they experience stigma in the workplace at least every few weeks.
“When I first applied for, and didn’t get my first graduate job, I just assumed it was because I said I had diabetes. That really stuck with me, and now I never tick the box on the form in case someone judges me.” Female, living with type 1 diabetes.
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