Community Table: A Closer Look at Diabetes in the LGBTQ+ Community

Community Table is presented by the JDRF-Beyond Type 1 Alliance and made possible with support from Abbott Diabetes Care, Dexcom, Lilly, MannKind, Medtronic, Omnipod, Roche Diabetes Care and Tandem.

During our sixth Community Table discussion, Beyond Type 1 sat down with a group of experts and community members to focus on life with diabetes as a person in the LGBTQ+ community. Watch the discussion in full! 

Speakers included:

• Alexi Melvin, who served as the moderator for this event, has had type 1 for 17 years. She is also a staff writer at Beyond Type 1.
• Kyle Banks, who has had type 1 diabetes since 2015, is an actor, vocalist and founder of Kyler Cares, a nonprofit foundation that provides grants for insulin pumps and continuous glucose monitors for kids and young adults living with type 1 Diabetes. He is also a part of Tenth Magazine, a publication that highlights the history, ideas and aesthetics of the black gay community.
• JP Qualters,  who has had type 1 for 21 years, is an actor. 
• Ray Bella, who has had type 1 for 21 years, is an advocate for both people with diabetes and in the LGBTQ+ community.
• Simone Satchell, who has had type 1 diabetes (T1D) since 1993, is an artist. 
• Dr. Kittie Wyne is an adult endocrinologist at The Ohio State University who has worked with patients with T1D for 15 years.

Partial transcript of the conversation below, edited for content + clarity.

When were you diagnosed and what has your journey been like?

Kyle: I was diagnosed in 2015, I was on tour with the Lion King in California at the time of my diagnosis. I began feeling really ill and in a matter of two to three weeks, I lost 30 pounds, which scared the hell out of me and was the thing that made me seek care. I went to an urgent care facility that was across the street from the theater where the show was playing. He did a blood glucose test and he told me that he suspected I had type 2 diabetes because, at the time, I was on steroids for some vocal issues that I was having. On a prolonged regimen of steroids, so he thought that maybe that had induced a diabetic episode.

Three more weeks went on, I wasn’t getting any better. I was prescribed metformin and I just continued to lose weight and had no energy. As the show was wrapping up in California, we were moving on to Denver, but I decided to go home to New Orleans to see my physician. That’s when I was hospitalized and properly diagnosed with type 1 diabetes.

JP: I was diagnosed with type 1 diabetes when I was 10 years old. I was very physically active at that time and my teachers kept asking my parents if I had an eating problem because I was naturally thin. My parents took me to the doctor and they tested my blood sugar and it was extremely high. To a point where they rushed me into the hospital and I spent six days there learning all about diabetes. I was also diagnosed with celiac disease on the same day that I was diagnosed with type 1 diabetes.

Ray: I was diagnosed at 8. It’s crazy to think back, I wish I could remember more. But for some reason, I can’t remember anything. I remember going to the hospital and being diagnosed. My family wasn’t too familiar at the time, so I remember bad memories at that time when I was first diagnosed.

Simone: I got it when I was 10, like two weeks after my 10th birthday. I was pretty young but I remember eating a lot and being thirsty. Being young, I didn’t really like water, so I drank lots of juice, which kind of sped things up. My grandmother had type 2 diabetes, so I kind of knew about it. I was peeing a lot of and my teacher kind of was just pushing my mom to take me to the doctor. Then eventually, one day my mom took me and I had like 600+ blood sugar. I was afraid of needles, but at that time the only option was injections, so that was a lot to overcome and they were very not sensitive. But either way, I learned how to do all those things.

Where does diabetes rank on your list of identifiers?

Kyle: Diabetes ranks pretty high on the list. It’s all part of the discovery process, discovering who Kyle Banks is. I usually wear my insulin pump on my arm, because of the hardware, it usually sparks a lot of conversation centered around diabetes and, “What’s this patch you’re wearing? How’s it helping you?” Which is really great because I didn’t realize that doing that was like a form of advocacy, but it is. Especially working with the kids that I’m involved with because a lot of them are apprehensive about wearing the technology that’s available on their body.  I initially started wearing it on my arm because it was a great wardrobe at the show that I was performing.

JP: Because I was diagnosed so young, diabetes was like number one for me. Then as I grew into more myself and learning who I was and knowing that I wanted to pursue a theater career, I became more comfortable with becoming gay and being gay. That just kind of happened naturally but I definitely tied two and two together. For me, at least being a gay with diabetes is definitely what I promote, to feel comfortable talking about it and using and showing their devices when they go out and not having an issue with it. But performing is hard. I had to put my Dexcom in some strange places for some shows that I’ve done. So yeah, it depends on the show. Kinky Boots was rough, to say the least, but I made it work.

What’s one thing that you would want people to know about living with diabetes within the LGBTQ+ community?

JP: I’m a big advocate of speaking your truth and saying your feelings. I have a hard time not showing my feelings. Be proud of who you are and the traumas that you’ve had to make that who you are. I had to grow up very quickly with having type 1 diabetes as a 10-year-old. Injecting myself with insulin, getting sent on field trips by myself, or going to do a show by myself. I’ve had to grow up very quickly, so I think that is part of the reason why who I am today. Speak your truth and know that having diabetes is just part of your journey and it’s making you a stronger, better human being in the end.

Kyle: Speaking your truth is so important. I get the fear and the trepidation that comes up with sharing these types of things. Especially as those that identify as gay men, we know it can be a little toxic sometimes. We’ve seen the way people living with HIV are treated and the terms that are used to describe that disease, especially on the apps like Grindr and Jack’d. The use of the words like “clean” and “dirty.” Why wouldn’t those fears transfer over to this diabetes space? We have to do a better job at pushing against that toxic way of being within the culture just in general.

Simone: Make space for yourself. Over time, I figured out what I needed to be at peace: who I needed to be around, the type of space I needed at different times was helpful for me to be able to explain that to folks. I’m trying to spend as much of my time being my complete self, with all the layers, and be accepted. Also, have folks who are down to learn who I am and not assume.

Ray: Speaking your truth is probably the most important thing. Don’t be afraid to speak about who you are. There are going to be people who love you regardless. If anyone’s listening to me, they can tell that I have a lot of hesitant when speaking about both things. But speak your truth and don’t be afraid. That’s something I wish I had learned many years ago and not close to 30.

How do psychosocial elements play a role in diabetes management?

Dr. Wyne: In terms of body image, there are so many things that people can worry about. For me, one of the challenges is, “What is it about their own personal self-image or body image that becomes a barrier to their diabetes?” Is it related to the shots? Is it related to bruising from the shots? Is it not wanting to wear devices because it doesn’t fit in with your image, you’re scared someone’s going to see it? I have to respect that and I have to find a way to work around that.

One thing that we struggle a lot with is people figure out very young that you can manipulate your insulin to get your sugar high to quickly drop some weight. They’re then going to manipulate that so their sugar is way too high to keep their weight down and that’s not healthy. But how do you tell a young adult that’s not healthy, that’s dangerous in the long-term? That’s a very fine line, because one thing I’ve learned is the last thing that someone with type 1 diabetes who’s struggling to find their place in life does not want to be told is to take care of themselves. They don’t need to hear you’re going to go blind, you’re going to have kidney disease. That’s the worst thing I can do because it’s not going to scare you, it’s just going to shut off communication. I have to find a way to try to figure out how to keep the communication open and still figure out what the barriers are.