Body Image + Stigma in Diabetes
September Summits are presented by the JDRF-Beyond Type 1 Alliance and made possible with support from One Drop, Roche Diabetes Care and Xeris Pharmaceuticals, active partners of Beyond Type 1 at the time of publication.
During September Summits, Beyond Type 1 sat down with a panel of experts and community members to discuss collective perceptions of body image in the diabetes community and across both type 1 and type 2. This panel provided a unique opportunity to talk about misconceptions of diabetes and unhealthy narratives pertaining to body image, as well as harmful stigmas about diabetes that are often perpetuated by those outside the community. Watch the discussion in full!
Speakers included:
- Anna Norton, who moderated this discussion, has lived with type 1 diabetes (T1D) for 27 years, and is the CEO of online support organization DiabetesSisters
- Julia Blanchette, PhD, RN, CDCES, a diabetes care and education specialist at the Cleveland Clinic Diabetes Center, who has also lived with T1D for 21 years
- Dex Geralds, a fitness trainer, actor and model, who has lived with type 2 diabetes (T2D) for seven years
- Kylene Redmond, social media personality “Black Diabetic Girl,” who has lived with T1D for 10 years
- Liz Cambron, PhD, a fitness and health coach, who was diagnosed with T2D six years ago
Partial transcript below, edited for content + clarity.
How do you practice body positivity + what does it mean to you?
Kylene: I wear a pump and a continuous glucose monitor (CGM). For me, it’s about showing that plus size is not bad, it’s not wrong, that diabetes comes in every shape, size, color, whatever. First and foremost, I wear my devices, where it fits me, where I’m comfortable, but I’m not shy showing them. I don’t mind, I don’t care about the stares or things like that, because it starts conversation most of the time, which turns into education.
Liz: I completely agree, I used to be very shy and think, “Oh, I know people are squeamish about blood, I don’t want to test my sugars because of it.” But now that I have the continuous glucose monitor on my arm, I have to flex to show it sometimes. I see it as my strength now, but it’s just reminding myself that my body is what it is and I have to do what I need to do to take care of it, it’s not about the fashion statement or fitting in, it’s about being alive and being healthy.
Dex: For me, the most important thing is being mindful of my body and checking in with it and making sure that if there’s extra pains, taking care of that. I also know that my body moves the way it moves, that’s just because of who I am, and not compare it to anyone else’s. I don’t really think about the weight or what my body looks like, but how it moves. I think that’s just a great way to measure: what am I looking for? Instead of just focusing on what you see, it’s more of a physical thing, and that can be a lot more helpful for positivity with your body.
Julia: I’ve been wearing diabetes technology since I was 7 years old, and as a 7-year-old, that’s something that made me feel isolated and different. Once I started meeting other people with diabetes who also wore insulin pumps, I looked at it as something that made me unique in a good way. Whenever somebody is looking at it, I do use it as an education point or a conversation starter. Everyone’s different, everyone has their differences, and this is just me.
Anna: For a very long time I didn’t want to wear any kind of diabetes device, because I was a young woman, and I was really concerned about how that was going to affect my dating life, how it was going to affect the people that I encountered. I like to wear my diabetes devices, I always say, I wear my diabetes on my arm. Because I wear my pump on my arm, I wear my CGM on my arm. I always use that as a teaching moment, but also as sort of a moment of pride. That we’re living well, that we’re doing the things that are beneficial to us, for our body and our mind. For other people that we influence and that follow our example, we’re not perfect, but the fact that we wear this so prominently on our sleeve and literally on our arm really shows a lot about how we approach diabetes and positivity and body image.
What are some of the misconceptions you’ve encountered?
Dex: When I was diagnosed with type 2 diabetes, I was in the best shape of my life. Six pack, all of that, and working out twice a day. The stigma around people living with type 2 diabetes is that they are often overweight or they don’t work out, exercise, they don’t move. Every time I talk to someone about diabetes, they always assume that I just have type 1 and not type 2. The stigma around that, it’s great for me to come from this perspective, because I can let people know that’s not the case. A lot of those behaviors that cause type 2 diabetes aren’t because of a person is just lazy or not doing the things necessary to be healthy, but a lot of things we learned growing up or just learned behaviors. You don’t ever realize that it’s not the right way to manage your health.
Kylene: I’m the complete opposite of Dex. When I was originally diagnosed, because I was a little overweight, they automatically thought that I was type 2. That, along with the color of my skin, those two things, as well as my age, right? When people meet me, they automatically assume that I am type 2. Back in February, me and two of my girlfriends were at a conference, and a woman said to us, “Oh, you guys are here? Do you have type 2?” And we were like, “Nope, we’re all type 1.” I’ve dealt with that personally, where people just automatically assume that I’m type 2 because of my weight. All type 1s aren’t small, we all come in different shapes and sizes.
Liz: 90 percent of my family has type 2 diabetic. I grew up seeing that, seeing my family members not necessarily take care of themselves. As a Mexican, it’s not really in our culture to talk about health, to really take care of ourselves. I always saw it as, “It is what it is, you’re doomed. Once you’re diagnosed, it’s downhill from there, so why even try?” That image of type 2 diabetics being lazy, not caring, not working out was something I actually lived and was ingrained in me. When I was diagnosed, it really messed with my mindset because I thought, “Well now I’m one of them, now I’m destined to be overweight, inactive.” But I was actually the best shape of my life, I was working out, following nutrition. I’ve gone from being the outside person looking in to now being on the inside looking out. It’s those misconceptions that really pushed me to share my story now and to really help people breakthrough that barrier because it’s sometimes those misconceptions that prevent people from seeking help. Because they don’t want that label of being a diabetic which comes with all this stigma.
How can we start to erase those lines of stigmatization across the Type 1 + Type 2 communities + help one another understand?
Liz: Having events like this where people from both communities come together is really valuable. If it wasn’t for this, I wouldn’t know type 1’s perspective or know their experiences if it wasn’t for discussions like this. Having some sort of way of bringing both communities together is really important and having people from both communities sharing their experience. That way we can learn from one another and really put ourselves in each other’s shoes. We’re both fighting similar fights, there’s no reason why we can’t fight them together.
Kylene: I agree with Liz, I think that having more of these discussions with both parties involved opens the door for other conversations. That representation definitely matters so people can also see that visualization and think, “Oh, there’s someone that looks like me!” You get to be more comfortable with sharing your story and it brings other people together.
Julia: Everything that Kylene and Liz said nails it. As someone with type 1, when I became a diabetes care and education specialist, I wasn’t sure how I was going to connect with people with type 2, and I thought maybe it was very different, but the more stories I’ve heard and the more people I’ve connected with, the more I learned that we really do experience a lot of similar emotions and a lot of similar self-management, like barriers and issues. There are so many things that are similar that I think it’s so important we support each other so that people don’t feel as alone.
How can I explain to people that I’m comfortable the way that I am or that I don’t need to change without being rude?
Julia: Be yourself. It’s okay to tell people that you’re comfortable the way you are.
Kylene: I agree, I’m a firm believer of speaking my piece, of saying how I feel. Keep living your life and tell them, and if they choose not to want to understand what you’re saying, then remove yourself from that friendship or from the situation, but don’t let them change you and live your life!
Liz: First of all, you don’t owe anyone an explanation. Unless they’re buying all your meals for you, what you’re eating is none of their business. I could see if it’s coming from good intentions of, “I care about you, I don’t want you to eat anything bad for you,” but you’re an adult, you know what you need to do. You do you, you know what you need to do. If people are causing stress in your life, you need to just remove those people from your life.
Dex: I wouldn’t worry about coming off as rude if you’re comfortable with who you are and you know you’re doing the things necessary to be happy. If they have an issue with that, that’s their issue, not yours. Speak your piece every single time and don’t let anyone change you!
To watch the entire discussion, click here.
