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world diabetes day 2024: ending stigma starts with awareness and education
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najeeb ashraf aims to educate more people on what living with diabetes is all about as well, through his strong advocacy pushes. he believes that patients need a community to turn to when things get bad, and that will make all the difference.
najeeb ashraf
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this article was produced by the healthing editorial team with the support of a grant from diabetes canada. while diabetes canada made the production of this article possible, they did not have any editorial influence or control over the content, including review prior to publication.
diabetes is prevalent in canada. according to diabetes canada, roughly 30 per cent of canadians live with diabetes or prediabetes, with 15 per cent living with an undiagnosed case.
even with its commonality amongst canadians, those with diabetes continue to face stigma and discrimination for the condition, ranging from misconceptions about the disease, judgement and prejudice from peers or healthcare providers, and exclusion from groups or activities based on their health status.
dr. michael vallis, an associate professor of family medicine at dalhousie university in halifax and a health psychologist specializing in diabetes, obesity, and cardiovascular disease, sees in his daily work the toll the stigma associated with diabetes can take on those who experience it.
he believes that the stigma, which includes feelings of blame and shame surrounding the condition, begins with something called the “just-world hypothesis,” a widespread unconscious belief that people get what they deserve.
“we kind of look for an explanation for things, and so, what ends up happening is that people without diabetes, especially (when looking at) type 2 diabetes, they look at it like you brought this on yourself.”
he goes on to note that people with diabetes are often left to deal with comments surrounding what they’re eating and why they’re eating it – all with a tone of judgment.
“if you’re living with diabetes and you’re sort of managing it, you make your own choices as to what you’re going to eat and when, and you’ve probably figured it out,” he said, meaning that people with diabetes have a strong grasp on how to take care of themselves, one that those without the condition simply don’t understand.
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najeeb ashraf, a medical communications and medical affairs specialist, has been living with type 1 diabetes for over three decades and working within the medical space, lending his expertise to organizations geared toward researching diabetes and advocating for a better understanding of the disease.
while he notes that he doesn’t experience any feelings of self-blame for his condition, he does deal with comments from others who don’t know what diabetes really is.
“you eat a lot of sugar. you have a lot of high sugar,” he said of comments he’s received when using his insulin pump around others. “that’s why you’re using it. ‘oh, you know what, you should start eating this, you should start eating that.’ i’m like, ‘thank you so much. i don’t eat a lot of sugar, and diabetes does not happen because of eating a lot of sugar.”
through his experience living with diabetes and working in the medical sphere, he’s come to the conclusion that there are three specific reasons why people make negative comments towards those living with diabetes—one of which is the most to blame.
“i see the tone of the individual could be, number one, ignorant. number two, trying to make fun of it. number three, they’re trying to put you down,” he said. “perhaps, right now, the second or the third options are very rare. the first option is more prominent.”
the misconceptions that drive stigma
diabetes is a complex metabolic disease that, if you’re on the outside looking in, is hard to truly grasp. according to dr. vallis, many people view the disease as minor because those who are managing it do so well they don’t look sick at all. but that isn’t the reality. diabetes is “major.”
“it’s probably one of the most burdensome diseases because it’s really a disease around your ability to regulate glucose, and so everything you do will impact glucose levels. everything you eat will raise your glucose levels. all your physical activity will lower your glucose levels,” he said. “so, a person living with diabetes has to sort of navigate the world around the choices that they make, taking their medication, testing their blood sugars, monitoring, and then physical activity, healthy eating – all of this stuff.”
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people living with diabetes have to factor in their condition in almost every decision they make when it comes to basic survival because if they don’t, it could lead to complications.
dr. vallis also notes that people look at it as a very individual disease, meaning it’s up to the individual to take care of themselves adequately. still, the environment plays a massive role in how well-managed diabetes is.
“the support that you have is hugely important. imagine if you exercised and you lived in a community where there’s sidewalks and there’s parks and everybody on your street walks and runs versus you’re living in the inner city and there’s, you know, drug dealers on the corner and there’s no sidewalks, and it’s kind of a dangerous place and nobody exercises whatsoever,” he said. “the environment that people live in is incredibly important in helping people, but we tend to not look at it that way. so, a lot of this stems from this idea that ‘hey, you did this to yourself.’”
putting the onus on one individual with diabetes and telling them that their disease is their problem only perpetuates the cycle of stigma because it ignores the other aspects that affect disease management.
ashraf believes that ignorance surrounding what diabetes entails is the number one driver for comments that perpetuate the biases and stigma that exist today toward people with the condition.
“they would comment because they’re not aware,” he said.
however, he also believes that stigma, while wrong and challenging to cope with, may always be there, so it’s up to people living with diabetes to do their part in educating others so that the understanding is better.
“you can’t avoid it (stigma). be aware and look for it as an opportunity for people where you could actually just educate them,” he said. “maybe you spread some awareness about it because you’ve been through it.”
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diabetes stigma and its consequences
along with environmental factors and a lack of understanding, there are also other barriers faced by people living with diabetes that can negatively impact others’ views of them, as well as their opinions of themselves.
dr. vallis shares how he recently met a pilot living with type 1 diabetes who was the first ever to be able to get licenced to fly in a commercial airline in canada. that was only two years ago, showing that workplace stigma is still going strong when it comes to diabetes.
“those are the sort of discriminations, and then it would show up in the workplace. like, ‘oh, this person’s going to take a lot of benefits. this person’s going to need a lot of resources. this person is probably going to have more sick time,” he said. “so, employers look at this from a negative lens.”
this type of barrier is considered frank discrimination, and it occurs even when protective measures are in place to ensure that these prejudices don’t exclude someone from a specific job they’re qualified to do. that said, subtle discriminations also exist in professional settings.
“it’s the comments. it’s how comfortable does someone you know experience just using technologies, for instance, or if you have diabetes and you come to a meal, we kind of say, ‘okay, well, we’re going to have cherry cheesecake for dessert, but we baked you this thing, and you can sit there eating this (instead) sort of thing, right?” said dr. vallis.
these seemingly minor but still damaging discriminations can take a heavy toll even if they seem harmless to those without diabetes.
“it has a huge effect on distress and self-care. so, the mental burden of diabetes goes up,” he said. “your ability to manage your disease goes down, and as a result of that, you have impaired control.”
self-stigma is also strong in people living with diabetes because of the misconceptions surrounding the disease. it can get even worse for those with the condition because they end up believing they deserve the cards they’ve been dealt.
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“what ends up happening is these people, they get treated poorly, and they internalize it. they somehow feel like, i guess i deserve it, and then that actually is what’s really, really dangerous,” said dr. vallis. “so, the experience of being stigmatized leads to internalized stigma – people who start to worry about themselves. ‘i don’t want to take up my test kit because i’m worrying about what you might think. i’m not going to take my insulin right now because i’m worried about how you might perceive it.”
self-care for diabetes is the responsibility of the person living with the condition to a degree, but with stigma and other factors, it’s not that simple. there is a motivation piece that can be severely dismantled when in an environment that doesn’t foster support.
“we tend to look at motivation as if it’s all on the individual. you have to be motivated,” dr. vallis said. “well, your motivation is tremendously affected by your environment, and as we know, in a healthier environment, it’s much easier for people to engage in healthier behaviours.”
according to ashraf, his diabetes management is at its peak. but even with the proper support and being involved with organizations geared toward advocating for better diabetes care and research, staying on top of things isn’t always easy.
“there are days that you’re actually very disturbed. the days where you’re actually broken down because you’re managing hypoglycemia, hyperglycemia, your energy drains out, and in the midst of all of it, you have to be a normal human being,” he said. “some people think, ‘oh, there’s something wrong with you.’ well, yes, it is. but i’m not entitled to explain it to you because you won’t understand it. so, it does affect you mentally. it does affect you a lot emotionally, too.”
addressing stigma for a better tomorrow
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spreading awareness about diabetes is a significant factor in changing the narrative because the more people who understand what it entails, the more support there will be. people must understand that diabetes is as complex a disease as any other.
“diabetes is a challenge because it’s like juggling six balls in the air as you’re riding a unicycle. surprise, surprise, you’re going to drop some balls. you’re going to fall off,” said dr. vallis. “the more support people have, the more they can do it, and that’s where i think we can change the conversation in that regard.”
ashraf aims to educate more people on what living with diabetes is all about as well, through his strong advocacy pushes. he believes that patients need a community to turn to when things get bad, and that will make all the difference.
he also urges people to utilize support groups as much as possible and, most importantly, when things are as bad as possible.
“come here when you’re actually not feeling good,” he said. “that’s where you need to find an outlet. don’t keep quiet. don’t feel isolated. don’t shun yourself and go to some corner and sit and cry. talk, express. reach out, share. there is somebody who’s going to help you.”
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