When Beckett Nelson began transitioning from female to male, he had already been living with type 1 diabetes for over a quarter-century. But as that transition ramped up from a social circle name change into a medical transformation and hormone therapy, Nelson was pretty concerned about the combo of LGBTQ life and diabetes.
“There were times with the diabetes that I wasn't sure what to expect and didn't know anybody in the same boat,” says this 38-year-old nurse in Toronto, Canada. “I know everybody is different, but it would have been helpful to know what I was up for."
Aside from the unknowns of gender transition itself, many diabetes-specific questions seemed to complicate the situation. Looking back now, though, Nelson knows he is fortunate because many in the LGBTQ community who happen to also be living with diabetes don’t have the kind of support he’s been lucky enough to have.
Take for example a recent story out of Michigan, about a 19-year-old living with T1D who came out as gay and his parents apparently disowned him – even removing him from their insurance, meaning he was no longer able to afford the high-cost insulin needed to survive, and forcing the young man to turn to the Diabetes Online Community (DOC) for support while he applies for Medicaid assistance.
That's a tragic example that makes the blood boil, but it’s just one of the many issues that our LGBTQ friends with diabetes face. There is no established support system that exists for this group, nor much in the way of scientific research or protocol on how healthcare professionals handle these individuals.
Yet those LGBTQ D-peeps are forging ahead and creating their own channels to connect and support each other, including tapping into existing diabetes resources both online and offline.
We talked with a handful of LGBTQ D-peeps in recent months, hearing their stories of how they’ve managed diabetes hurdles that go along with openly embracing their sexual and gender identities. Many point out that the challenges of being in the LGBTQ community are in some ways similar to those faced by the D-Community.
"Both populations are plagued by myths and misconceptions, (and) both face constant legal, social, and economic battles," says Cat Carter in Connecticut, diagnosed with T1D shortly after her 30th birthday in 2015. She came out as lesbian during her sophomore year of college despite knowing since her teen years that she was gay. "There are major issues and minor nuances that take up valuable headspace, time, and money. And as with any disenfranchised or minority group, there are various parallels with the struggles we face. It’s no wonder many of us struggle with anxiety, depression, and fatigue."
LGBTQ Cultural Sensitivity and Healthcare Fears
One of the leaders in this field is Theresa Garnero at UC San Francisco, a mover-and-shaker in the diabetes space who's been a nurse and CDE (certified diabetes educator) for more than three decades. She's a preeminent authority on diabetes, a prolific diabetes cartoonist, former jazz pianist and a former national hopeful figure skater (seriously!). Among the many diabetes initiatives she’s been part of through the years is a focus on developing cultural sensitivity training for healthcare professionals regarding the LGBTQ community with diabetes.
“We need to just be more aware that the sexual minority are in every avenue of practice, and not assume heterosexuality when treating people with diabetes,” she says. “That can alienate the very people you’re trying to serve.”
Garnero plans to speak on this topic at the upcoming AADE (American Association of Diabetes Educators) conference in August, showcasing some new research on this issue, and offering resources on providing culturally-sensitive diabetes care to those in the LGBTQ community.
The little research that exists about diabetes outcomes and LGBTQ specifically paints a bleak picture. A Northwestern Medicine study from 2018 is one of the first of its kind to examine how health behaviors are linked to "minority stress" – issues of being stigmatized and marginalized – and how this may contribute to the risk of poor health among LGBTQ youth. That includes worse mental and physical health outcomes, the study authors found, and Garnero notes that it can certainly applies to those with T1D, especially if their healthcare professionals aren’t interacting with them effectively.
Then there are studies showing PWDs in the LGBTQ community often face more severe complications, fueled by the mental health struggles and stigmatization that comes with sexual and gender identities that society sadly rejects if not viewed as "normal."
In the Philadelphia area, well-known CDE and type 1 Gary Scheiner says that his staff at Integrated Diabetes Services have discussed the topic of LGBTQ individuals and diabetes care, and generally try to follow a guiding principle:
"In general people w/T1 who are LGBTQ have very similar needs and issues as anyone else," he says. "There may be a bit more risk of disordered eating and some discomfort wearing devices on the body. Also very important for clinicians to use proper language in order to avoid seeming judgemental. Transgender individuals often have hormonal irregularities that influence glucose levels."
Garnero agrees, and notes that it can be difficult to find a doctor you can trust. “When you are gay and you go to a doctor because you’re sick… I mean, we know the challenges just living with diabetes, and we ask, ‘Are they with the program or are they not?’ On top of that, crap ‘I have to come out and will I face hostility?’ Or will this person really care for me? It’s really a double-edged sword. It’s hard to find someone who is on your side even within the diabetes world, but you add on a sexual minority component and it's even more difficult.”
Garnero recalls a friend in the D-Community who’d started the Diabetes and Gays Foundation in the Bay Area which is now dissolved, and he had a doctor tell him “that every Low he got, he’d deserved because he was gay.”
Another example Garnero’s heard is that whenever a young adult female with type 1 ends up in the ER as a result of high blood sugars and diabetic ketoacidosis, the hospital staff automatically does a pregnancy test -- and charges insurance for that! No matter if the young woman is saying she’s there for DKA and needs insulin, and that she's gay and there’s no way she’s pregnant; the hospital ER staff just isn’t listening to her.
“People don’t want to go to the doctor anyway,” Garnero says. “But in the subculture of the sexual minority, I’d say there is generally even more distrust because the very person you’re trying to get help from might actually hurt you. Within the community, there is a lot sharing on that risk before you go outside to seek counsel, and it’s a crap-shoot. It can be fraught with issues.”
Hearing From LGBTQ People with Diabetes
In Los Angeles, D-peep Dave Holmes shares his story of being diagnosed at age 44 in 2015 -- long after he'd come out as a gay man decades ago. He says that many parts of life with diabetes are the same as they would be for anyone, but other parts are more pronounced within certain sexual minority communities.
"People are ignorant about diabetes in general, but when you add the body-shaming that is rampant in certain gay sub-communities, sometimes a person can feel especially judged," he says. "I do triathlons and marathons and am generally one of the most active people I know, but the idea that abs are the only true marker of physical health is particularly strong in some gay circles. I know it’s garbage, but it can get exhausting."
Holmes adds that "coming of age in the ‘80s, growing up in mortal terror of HIV/AIDS, being so psychotically focused on safer sex, and then getting the other autoimmune disease feels like a cruel irony."
While cultural insensitivity certainly exists, not everyone in the LGBTQ+ community experiences that as it relates to their medical care teams. For Carter in Connecticut, she knows that's a privilege and appreciates it, especially in her work as a college career and academic advisor.
"I’m incredibly fortunate that the endocrinologist to whom I was initially referred is amazing," she says. "He and his staff are nothing short of rock stars, and I’ve felt safe and open with him from my first appointment. However, in my work with college students, I've heard of those who’ve been kicked out of their homes for coming out."
For finding LGBT-friendly healthcare providers, Carter points to two resources:
To Carter, it's all about safety, both related to healthcare issues and life at large.
"What they don't tell you about coming out is that you have to do it over and over and over again. Forever. It never really ends. It’s like diabetes in that way," she says. "It’s not one fell swoop and bang!, you’re out and you never have to deal with that again. You’re constantly meeting new people, feeling them out, trying to determine if you can casually mention your girlfriend or your wife like same-sex couples mention their significant others without even thinking about it -- without worrying about how the other person/people will react/look at you/treat you. Is it safe to hold hands here? Is it safe to dress androgynously where I’m going today? If (my partner) Melissa and I are traveling across state lines and we get in a car accident, will medical personnel or hospital staff ask who (our son) Liam’s mom is? Will one of us be separated from him? Will we be separated from each other?"
"The questions and new scenarios are endless," she says. "And ultimately, in my humble opinion, it all comes down to safety. I’ve been screamed at when walking down the street with my (then) girlfriend. They threw garbage at us. We’ve had vendors refuse to work with us because we’re gay. Was that annoying? Rude? Disheartening? Sure. But the screaming stranger and flying garbage was much more terrifying. You can live in the most liberal place on the planet, and all it takes is one maniac to ruin everything. So that fear is really always there in the back of your mind. No matter how many micro-aggressions you brush off. No matter how much humor you use to deflect. No matter how many allies you’re surrounded by. No matter how much confidence you exude or fabulousness you possess. You’re constantly on alert about being safe without even realizing it. It truly becomes second nature."
Beckett Nelson, who's been transitioning from female to male for the past year, also notes that he is lucky when it comes to his healthcare team.
"My experience with my own HCPs has been pretty good," he says. "At first, they would intermittently get the pronouns wrong, which stung. But with a bit of time it's gotten better. With an ER visit, I was constantly 'She'd' and 'Her'd,' which was frustrating. Or when they wouldn't do it to my face, but then close the curtain and do it... like I couldn't hear them."
Just prior to transitioning, Nelson said his endo went over the usual side effects of testosterone: lower voice, hair growth, acne, etc. But there was no mention of diabetes or how it might impact that side of his health, such as blood sugars. He says little medical info exists on that dual topic, but he found help from the DOC -- even D-parents sharing that their teenage sons were a bit more sensitive to insulin, which was informative.
"I have been progressively more sensitive to insulin, and I have a bit more trouble getting low sugars up," he observed. "Also, at the beginning, I noticed my sugars were a lot more up, down, up, down. I'm still making changes to my basal rates and insulin-to-carb ratios, but it's a little better now."
When he first started testosterone, Nelson says he'd gone from 90% of time in range down to 67% in range. Now after about a year, he's back up to 80% in range. His diabetes care team noted it'd be OK to have a slightly higher A1C when he was first transitioning, but Nelson says he's a perfectionist, so he's doing all he can to get back to the highest TIR (Time in Range) and lowest A1C possible.
S. Isaac Holloway-Dowd in Kansas is another female-to-male transgender, diagnosed with T1D as an 11-year-old girl in 1993 – with blood sugars above 2000 mg/dL (!) leading to a two-day DKA coma. This was long before he came out as transgender in 2005 at age 24, and before starting on testosterone over a decade ago now.
“I went through the same steps most FTMs did, but waited a little longer to start hormones as I wanted to be sure that I was making the right choice and that I was doing it in a healthy way,” he says. “I saw a therapist and received a letter to start hormones and had my diabetes endocrinologist's OK to start. I initially started testosterone with a different endocrinologist and this is maintained by my primary care provider who is LGBT-friendly and has more experience in transgender health concerns.”
Holloway-Dowd says those first weeks in 2008 were a glucose rollercoaster. Then, as menstrual cycles decreased gradually and stopped several months later, that brought on more stable BGs. He’s also noticed his concentration and focus have improved, and thoughts of self-harm and suicide that had plagued him for so long were almost completely obliterated after starting testosterone.
He married his female-to-male boyfriend of four years in 2012, just about a month before getting a full hysterectomy. “I have been blessed with great healthcare experiences aside from a nurse after my hysterectomy who refused me care. I stood up for myself and demanded respectful and appropriate medical treatment. When I get the sense that is not so, I may closet aspects of me to get the care I need. As I pass as male and can even pass as straight, I can do this, but I know most LGBT diabetics are not that lucky.”
He also notes that healthcare providers less comfortable with pronoun switching from she/her/hers to he/him/his stuck to a preferred name and "you" and this served them well. "Medical language is fine, but speaking from experience, it is very affirming to hear your pronoun attached to your anatomy. However, other transgender folks may have their own preferred terms… and it is okay for a medical provider to ask.”
Teaching gifted elementary and middle school students at a south-central Kansas school district, Holloway-Dowd also runs a Facebook group called “My Pancreas Is Queerer Than. Yours” with 50+ members. He also follows a Greece-based group called “Queer Diabetics” online. Additionally, his FTM husband has type 2 diabetes and is completing his master’s degree to become a medical social worker.
“I am grateful for insulin and testosterone,” Holloway-Dowd says. ”I wouldn't be here today without those hormones.”
In San Francisco, Alexi Melvin recounts her own T1D diagnosis that came at age 14 when she had just transferred to a new high school in Scottsdale, AZ -- about a year after she says it had become abundantly clear that she was attracted to women (probably thanks to Nicole Kidman in Moulin Rouge!).
"When I was younger, to say that both T1D and being gay stunted my evolution into finding my place in the world and within my own skin, would be an understatement," she says, acknowledging that she was lucky to have support from family and friends. "I didn’t know anyone back then who had type 1 diabetes, nor anyone my age who was gay. But with the evolution of social media, that quickly changed."
"Finding the LGBT community was the first step towards feeling heard. There were several websites and communities that helped me connect with others and be able to come out of my shell. The T1 diabetes community took a bit longer to blossom, but when it did – it was massive," she says.
A Family Perspective
We also talked with Cynthia Deitle, a D-Mom in Tennessee who’d previously worked for the FBI in civil rights and hate crimes before moving to the Matthew Shepard Foundation, where she manages programs and operations for the LGBT non-profit organization. She and her wife have a young son, who was diagnosed with T1D at 2-1/2 years old in 2013. They’ve attended and volunteered at the Friends For Life conference in Orlando each summer for years now, and at the upcoming conference, she will be leading a session on T1D legal rights and interacting with law enforcement.
Deitle points out that diabetes conferences and events often aren’t inclusive for LGBTQ folks and families, at least not visibly. They haven’t really met any other same-sex couples with a type 1 child, other than an occasional sighting at the FFL conference.
She says they were worried about their son being double-different, in the sense that he's the only kid in his 2nd grade with type 1 diabetes, and the only one with two moms. Fortunately, they haven’t yet heard Jackson say one thing about feeling different, because they have encouraged him to do and be whatever he wants. But she and her partner still felt they needed support.
“Families want to know that they aren’t unique and aren’t alone, that they are not different. They want to engage with people who are just like them, which is a very sociological human need that everyone has whether it’s religion, race or national origin. People tend to gravitate toward others who look and act like them.”
Peer Support for LGBTQ Diabetes Peeps
Finding peer support from those who "get it" when it comes to LGBTQ and diabetes is clearly critical, but not always easy.
In West Hollywood, CA, Jake Giles (diagnosed with T1D as a teenager) recalls his freshmen year at Loyola University Chicago when he met more LGBTQ people in one week than he'd met previously in his entire life. He recalls meeting another gay type 1 from a neighboring Chicago university, and not being able to contain his excitement. They tucked themselves into a corner at a house party and talked for hours about their journeys as young diabetics and gay men.
"I told him about the time I was hooking up with someone and had to stop because my blood sugar crashed," Giles recalls. "He told me about being at a gay bar and having to leave because he was drinking on an empty stomach, and could feel himself going low. We both had been on dates where we had to explain to our dates what diabetes was, and inject ourselves at the table. For the duration of the party, I felt more seen and heard than I had since being diagnosed at 16."
Giles says after he wrote a Beyond Type 1 blog post in early 2018 -- "Coming Out Twice: Being a Gay Diabetic" -- he received dozens of messages from people across the country, expressing that same kind of kinship he felt in meeting another queer D-peep in college. That was the whole reason he wrote the post, to connect and find that peer support.
"The reason I wrote the piece was because I craved meeting people like me, and found so few," he said. "I'd joined a couple Facebook groups over the years, but never found a stable community. Some days are better than others, but the weak days would be exponentially better if I could reach out to people who I knew had similar life experiences. Just like being LGBTQ, being diabetic shapes your world view and daily perspective. Knowing someone understands you even a little bit more makes a noticeable difference."
Carter concurs, saying that she strategically got involved in T1D community programs and events where the odds of meeting other LGBT folks might be better.
"So without further ado, here is where I’m going to begrudgingly support a stereotype," she says. "Many lesbians play sports and enjoy being physically active. Personally, I’ve sought out programs like JDRF Ride and other endurance teams, Type One Run, and recently organized an all-T1D Ragnar relay team. And wouldn’t you know it, I now know three other people with T1D who are members of the LGBT community. I’ve also met some incredible, incredible allies through those programs!
For Holmes in LA, growing up in the 80s as a young gay man is a part of why he's turned professionally to a creative outlet. He writes personal essays for Esquire magazine and also hosts podcasts and TV shows -- in part, to be a rung in the peer support ladder for gay men as well as those with T1D, he says.
"Very soon after my diagnosis, I made the decision to be absolutely honest about it in everything I do. And honestly, I think that decision was motivated by my being a gay man. In my youth, I was so hungry for grownup gay voices, just to shine a light in the fog and model a life for me. When I would read a Paul Rudnick or an Armistead Maupin as a teenager, just knowing that they were out there and living and living well made me believe I could do it, too."
Holmes adds that following his T1D diagnosis in his 40s, he went through that same process and scoured the Internet for T1 athletes to meet with. The two go hand-in-hand, he says.
"I know on some level that being an out gay man in media is important for the isolated young gay kid out there, so it makes sense that the same would apply for T1D. Visibility is important. Plus, being out as a gay person and closeted as a diabetic just seems like a huge waste of energy."
To look for allies, here are some resources for D-peeps in the LGBTQ+ community:
- Beyond Type 1 (featuring a whole series of LGBTQ community members with diabetes sharing their stories)
- Connected in Motion outdoor activities group based in Canada
- Facebook groups: My Pancreas Is Queerer Than Yours, Greece-based Queer Diabetics, and other general FB groups that allow LGBTQ+ folks to connect (The Diabetic Journey, A1C Couch, and Diabuddies are some that have been mentioned specifically).
Of course, as "magical" and awesome the D-Community can sometimes be on peer support, not everyone is on board.
"Unfortunately... bigots exist in every population and community, including the T1D community – both in person and online," Carter points out. "Just because they have T1D or have a family member with T1D, doesn’t mean they believe in my right to exist as a gay American. It’s complicated. It’s layered. And it’s tiresome. That feeling of total 'ease' is never really there unless I’m with a group of T1Ds who I’ve already come out to and whom I know to be allies or family."
Our hearts break hearing stories of intolerance and insensitivity, and we appreciate every single person who shares their story openly! Huge thanks to folks like Theresa Garnero who are using their professional roles to make a difference and improve the lives of people who are "different" in society in more ways than one.