When Emily Goldman was diagnosed with type 1 diabetes (T1D) at age 20, the only person she’d ever known with diabetes was her childhood neighbor who succumbed to rare, severe complications. Two years later, hearing she had contracted the same condition, she was in shock.
“We were all so scared,” recalls Goldman, now editor of a digital magazine based in New York City.
As she began her own journey with T1D, she was inevitably carrying this idea that her fate was an early death, not realizing that her neighbor’s tragic story was rare and that there was a world full of others out there thriving with T1D.
“During my senior year of college at Boston University, I had still never met another person living with type 1 diabetes. In one class, we had to do a final multimedia project and I chose to do mine on Ed Damiano’s bionic pancreas,” Goldman says.
After her presentation, classmate Christie Bohn approached her, sharing that she had T1D, too.
“Our connection was instant,” Goldman says. As luck would have it, Bohn already had a knack for vocal entertainment thanks to being a host for the college radio station.
They quickly decided to combine their skills and mission to reach more young people with T1D through a podcast and an Instagram account called Pancreas Pals, which features dynamic personal stories, tips and tricks, recipes, and more under the tagline, “Type 1 Fun.”
Goldman moved to New York City to begin her career and joined the JDRF’s Youth Leadership Committee there.
“Meeting so many other young people with type 1 diabetes, I no longer felt that subconscious belief and ‘death outcome,’” Goldman shares.
Through the JDRF’s Youth Leadership Committee, the pair met Miriam Brand-Schulberg, a psychotherapist who’s lived with T1D herself since age 6. She was to become their resident mental health expert on the podcast, and later co-host when Bohn headed to graduate school.
Turns out Goldman and Brand-Schulberg also both live with Hashimoto’s disease — also known as hypothyroidism — which is commonly paired with T1D.
“The greater purpose is simple,” explains Brand-Schulberg. “We’re just offering a sense of support and community to people — and our demographic tends to be young women.”
“Where we live, in New York City, sure, there are a lot of resources and opportunities to meet other people with diabetes. But that’s not the case everywhere, especially if you’re too old for diabetes camp and you’re out of college. In your mid-20s and 30s, it’s harder to meet new people, especially people with type 1 diabetes,” Brand-Schulberg explains.
An important part of their mission is to normalize the many struggles of living with T1D, the co-hosts tell DiabetesMine. They seek to bring balance to the often accidental messages communicated at the doctor’s office or in social media: That you should be striving for blood sugar perfection 24/7. No one can do that, and no one should be made to feel they’re failing on that basis.
“We are by no means perfect diabetics, if such a thing even exists! And we hope that our listeners find that very validating,” Brand-Schulberg says. “There are a lot of challenges in this disease, and yes, it does suck at times. But we also want to balance that with showing that you can still be okay and live a fulfilling life.”
Pancreas Pals episodes cover everything from busting myths about DKA and the flu to “diabetes technology 101,” and to handling blood sugars during exercise or your wedding day to coping with quarantine and decisions like whether to go back to campus during COVID-19.
Goldman says she is partly motivated by her own frustration in getting specific guidance from her doctor.
“For example, my doctor wouldn’t give me much information on alcohol because I wasn’t 21 years old yet, and a pamphlet can only do so much,” she explains.
Instead of helping her learn the precautions she should take if she drank alcohol as a person with T1D, her doctor simply suggested she not drink at all — not very realistic for a college student (or any adult with T1D). This was just one of many real-life questions she couldn’t find answers.
“We get a lot of these topic requests from our listeners — dating, starting a new job, sex, starting school, complications, other conditions, you name it,” Brand-Schulberg says.
“And we’re always looking for guests who have a valuable message to share with our listeners. Diabetes is so personal, everyone’s experience of living with it is so different. We want to share as many perspectives on living with type 1 diabetes as possible.”
Running a podcast during a time of global pandemic and tremendous political unrest gives you two options: Avoid the conflict or give those challenges a voice. These women chose the latter. They have not shied away from the subject of Black Lives Matter and how being a person of color also impacts your life with T1D.
Goldman says her most memorable podcast episode so far was an interview with Kylene Dyana Redmond, known online as @BlackDiabeticGirl. “It was so eye-opening for us. Her interview was strong, frank, so real and raw.”
In the podcast, Dyana highlights how little diversity she sees in diabetes-related marketing from pharmaceutical companies, noticing the majority of pictures are of Caucasians. The same problem exists in the speaker panels at diabetes conferences, she notes, which leaves her feeling completely unrepresented, unsupported, and unseen.
“You can’t have five white women on a panel to represent different backgrounds and throw one black woman in there to represent all of us,” Dyana said in her interview. “It’s time for these companies, organizations, and influencers to step up.”
Goldman also recalled a recent interview with Daniel Newman, a Black T1D advocate in England known as @T1D_dan on social media. He also hosts his own podcast called TalkingTypeOne.
Newman talked about medical racism and his experience with healthcare in the United Kingdom. He explained that their national healthcare system puts the burden on the patient to bring up and advocate for the benefits of an insulin pump. And access to diabetes technology is also determined by “quotas” depending on a person’s location in London, he said.
“At the end of the day, Emily and I are both young, privileged, white women, so it was valuable to get those different perspectives on things we take for granted, like, ‘Of course you want an insulin pump,’” explains Brand-Schulberg. “For Dan, he received the message of ‘No, no, you don’t want that, a pump is a last resort.’”
Like anyone else, even those hosting a podcast are vulnerable to making mistakes from a place of inexperience. The first few seasons of the podcast created unexpected learning opportunities for both women.
“I learned to change my rhetoric in how I relate to anyone with a chronic illness, type 1 diabetes or type 2 diabetes, or any other condition,” shares Goldman. In the earlier episodes, she had emphasized that people with T1D “didn’t do this to themselves,” which many people took to imply that those with type 2 diabetes are to blame. “I have spoken from a place of ignorance,” she admits.
Goldman herself was actually first incorrectly diagnosed as having prediabetes because of her age, and she knows firsthand what that shame perspective feels like.
“I learned that I needed to change how I looked at all chronic illnesses. I also learned how important it is to ask for help, to lean on others, to not shoulder the burden of diabetes or anything else all on your own.”
For Brand-Schulberg, there have been lessons, too.
“The biggest thing I’ve learned over the years is that there isn’t this one-size-fits-all lifestyle for type 1 diabetes,” she shares. “Not everyone wants the latest technology or is super comfortable wearing their gadgets out in the open, and that’s okay! There’s no one ideal to work towards, everyone has their own idea of what successful diabetes is. That’s more than okay, and I hope we convey that in the podcast, too.”
For her own diabetes management, Brand-Schulberg uses the Tandem t:slim Control-IQ insulin pump-CGM system, a “looped” system that constantly measures her blood sugar and makes adjustments with far less manual intervention required than ever possible before.
Goldman manages her diabetes with the Omnipod tubeless pump and the Dexcom G6 CGM using the homemade “looping” setup based on connecting the devices with a gadget called the RileyLink.
“It’s not magic,” says Goldman of her looping experience. “I used it as an open-loop for a while because I was terrified to give up that level of control. And then one day I decided to close the loop, and I love it.”
“I still have a big fear of lows, and you can accidentally overtreat lows because the insulin suspends a few minutes before the decrease in insulin actually hits. But now I have less than 1 percent of lows (on weekly average). And the highs aren’t as high, and I come back down more quickly,” Goldman says.
Brand-Schulberg had the same fear of letting go when she began with her connected system but eventually learned to rely on the technology.
“When I first started looping, I was overriding its decisions a lot. I thought, ‘This system doesn’t know me.’ I wasn’t trusting it and so my blood sugars were a total rollercoaster.”
She decided to give in and to “let it have its way with me for a week” and see what happens.
“We got to know each other along the way,” she says, gladly. “I still override it on occasion. To let something decide for you, I was definitely a little skeptical. I’m so baffled by how much type 1 diabetes technology has changed over the last 20 years.”
Brand-Schulberg adds that it improved her confidence going to sleep at night.
“Looping for me has almost eliminated the need for extended boluses, which I was always guessing with anyways,” explains Brand-Schulberg. “Those fattier meals, I’m much more confident going to sleep and knowing that my basal rates will rise and take care of that slow-digesting meal. It feels like a safety net. Our blood sugars still fluctuate, but it tightens the rollercoaster.”
Goldman says she had big expansion plans for Pancreas Pals before COVID-19 derailed many of those. So, for now, she’s focused on simply continuing to produce meaningful podcasts.
“We used to do weekly episodes, but now it’s biweekly,” explains Goldman, who’s found COVID-19’s effect on her work schedule to leave less time for podcasting. “And we do sell advertising but that money goes back into production. So we do 3-month stints of recording at a time, with two seasons every year.”
With listeners all over the globe, the hosting duo is grateful for every bit of feedback they receive across various social media channels, reminding them that their efforts to continue producing the show are appreciated and worthwhile.
One thing both women hope every listener takes away from their podcast is their shared philosophy of “give yourself some grace.”
“We have a broken organ that is supposed to do all these things itself and we’re making it up as we go, and that’s pretty impressive,” Brand-Schulberg said.