Greta Ehlers was only nine years old when she was diagnosed with type 1 diabetes. “I remember that I was on holiday with a friend, and I felt terrible,” shares the 26-year-old, who lives in Sweden. “I was so thirsty, and I drank so much water that I was going to the bathroom constantly.”
By the time she came home from her trip, Ehlers’ parents not only noticed her unquenchable thirst, but also that she’d suddenly become “very, very thin,” and that her eyesight was getting worse—all of which turned out to be early signs of type 1 diabetes.
A trip to Ehlers’ primary care doctor and a few blood samples later, Ehlers confirmed her diagnosis. She then spent about 10 days in the hospital to learn the ins and outs of managing type 1 diabetes, from calculating insulin and carbs to checking her blood sugar.
At first, Ehlers says she felt “panicked” because she couldn’t quite grasp what was happening or why. “I was only nine years old, and all I’d heard was that I’d have to be in the hospital,” she explains. “I was freaking out.”
Fortunately, though, her parents remained “very calm” throughout that time, says Ehlers. “They never really made a big deal about it, so that helped me to not see it as a big deal.” Even when it came to birthday parties, sports events, and other get-togethers throughout her childhood and teen years, Ehlers says her parents always encouraged her to enjoy these experiences without too many restrictions.
She was similarly met with acceptance when she began to embrace her queer identity in her early 20s. “I’m extremely happy, lucky, and privileged when it comes to that,” she explains. “I was a bit nervous at first, but I also knew that it wouldn’t be a problem, and it wasn’t. It was very smooth, and I’m so grateful for that.”
Finding Parallels In Her Queer Identity and Her Diabetes Experience
Ehlers didn’t always see a connection between being queer and living with type 1 diabetes. But as she got older, she explains, she began to realize just how much the two have in common, particularly in the ways they can affect mental health.
“Diabetes can cause a lot of stress. Being queer can also cause a lot of stress and anxiety,” explains Ehlers. The sources of stress in these two communities can, of course, be quite different from one another. Someone with diabetes, for example, may struggle with anxiety about low blood sugar episodes, while an LGBTQIA+ person may be more concerned about discrimination and shaming.
Nonetheless, both groups disproportionately face a number of mental health concerns. People with diabetes are 20% more likely than those without the condition to have anxiety, and about twice as likely to be diagnosed with depression. In the LGBTQIA+ community, the numbers are even more staggering: A 2019 survey of LGBTQIA+ youth found that over 70% of people reported feeling sad or hopeless, and that 39% percent had contemplated suicide in the prior year.
Combine these two identities, says Ehlers, and it can be easy to feel “isolated, alone, or misunderstood” at times.
Creating a Community of Awareness and Acceptance
In her mid 20s, Ehlers says it suddenly dawned on her that she didn’t know a single person with type 1 diabetes. Plus, she continues, she couldn’t help but notice how much “ignorance” there is around her condition. “There are a lot of stereotypes and misconceptions,” she explains (think: the misguided belief that type 1 diabetes is caused by eating too much sugar). “That really bothered me, and it still does,” she adds.
So, she turned to Instagram not only to find more people living with type 1 diabetes, but also raise awareness and bust myths in the form of letterboard posts about mental health in the diabetes community, racial health disparities in diabetes care, and much more.
After building a solid community of #diabuddies on Instagram, Ehlers had another realization: “I knew people with type 1 diabetes, and I knew queer people, but I didn’t know anyone who was in both of these groups,” she says.
To find more people who belonged to both of these communities, Ehlers posted an Instagram story in the summer of 2020 asking if there were any LGBTQIA+ people with type 1 diabetes out there who wanted to connect—and dozens of replies quickly came flooding in.
In the weeks that followed, Ehlers initially created a private group on Instagram for LGBTQIA+ people with diabetes. But, once the group grew too large, she eventually moved it to Facebook Messenger where she could host more people.
Now, the group is nearing 100 members from all over the globe, who use the chat as a safe space to talk about everything from the health effects of gender-affirming hormone therapy to recommendations for cute glucose meter stickers.
“It’s incredibly important to have people around you that you feel safe and comfortable with, who you feel like you can talk to about these things,” explains Ehlers. “I want to be a safe space for people who have diabetes who are queer. I want to have this space where people can safely speak about these topics and share experiences.”
If you’re interested in joining Ehlers’ group, you can DM her on Instagram at @gretastypeone for more details.
Looking for more ways to find community among people with diabetes? Download the One Drop app to connect with folks who understand what it’s like to live with a chronic condition.
This article has been clinically reviewed by Jamillah Hoy-Rosas, MPH, RDN, CDCES, and VP of clinical operations at One Drop.