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On August 5, 2020, we held our sixth virtual town hall meeting series on Talking Technology: Real Stories from PWDs, featuring people living with diabetes - Cherise ShockleyTiana Cooks, and Kyle J Rose. The discussion was moderated by Korey Hood, PhD.

Key takeaways:

  • What's your diabetes story?

  • How long after diagnosis did you try a diabetes device?

  • Were you nervous or apprehensive about starting a diabetes device?

  • Have you experienced diabetes device burnout?

  • What advice would you give to someone who was thinking about starting a device?

What's your diabetes story?
Cherise Shockley was diagnosed with Latent Autoimmune Diabetes in Adults (LADA) at the age of 23, prompted to visit a doctor after dealing with a chronic yeast infection.  “You have diabetes because your blood sugar is high, but you're 23 years old, so you don't fit the classic juvenile diabetes [stereotype] and you are 'too fit' for the type 2 diabetes stereotype,' so let me run some more tests,” her clinician told her. Cherise was sent home with a glucose meter. When the clinician called with her test results, the doctor said, “I've never seen anything like this before - you have a working pancreas, like a [person with] type 2 [diabetes], but you have antibodies like a [person with] type 1.” She didn't receive a diagnosis and was instead sent to an endocrinologist. With the endocrinologist, her diagnosis of LADA was confirmed.
Tiana Cooks shared her story, as well. “I was actually diagnosed when I was 17 years old, when I was a senior in high school.” She shared some of her symptoms before diagnosis - losing weight, visiting the bathroom frequently, bedwetting, and she remembered waking up one morning “and everything was blurry; I couldn't see anything.” She put her symptoms into Google and the return result was 'diabetes.' Her clinician confirmed the diagnosis after running some tests.  “I didn't really know the extent to which diabetes was going to impact and change my life. I'm still learning every day. It's been a journey, but I'm here.”
Also diagnosed as a teenager, Kyle Rose was living in a small town in Idaho when he found out he had type 1 diabetes. He had been seeing his regular primary care doctor for several months but diabetes was actually picked up by his eye doctor, who noted that his vision had changed dramatically in a short amount of time. “Sure enough, that same day, I went to the primary care doctor … and they detected sugar in my urine.”

How long after diagnosis did you try a diabetes device?
Kyle shared that he tried an insulin pump when he was in college.  “It was one of the earlier generations of insulin pumps, and the needle didn't attach and reattach as easily as they do today, so it wasn't really a good fit.” He cited his interest in sports as what made the older devices less than optimal at that time.  Korey added that the “starts and stops” approach to diabetes devices isn't uncommon, and it also doesn't mean a person has failed; it just may not have been the right fit at the right time.
Tiana said that she started on an insulin pump three months after her diagnosis.  “My doctors heavily recommended [it]. I was going off to college, live in a dorm, do regularly college things … and [my doctors] said 'If you have an insulin pump, it might make things easier for you.'” She cited an adjustment period with her pump and the need to get used to sleeping with it, but “I don't regret it.”
“When I was diagnosed [with LADA], I had the option to go on oral medication or insulin, so I was actually on oral medication … until I got pregnant, and then I was on insulin for a short period of time, then back on oral medication.” When her daughter turned two, Cherise told her primary care doctor that the oral medication wasn't working.  She was referred to an endocrinologist, who recommended insulin, and showed her the insulin pump options that were available at the time.

Were you nervous or apprehensive about starting a diabetes device?
Kyle was concerned that wearing a device would be a constant reminder of his diabetes. “I was at a phase in my life where I was striving for independence in general, let alone from living with this kind of disease … I was also worried that [a device] somehow made my diabetes more serious if I needed, or chose, to wear a device. Or that people would look at me differently, or pity me.” Cherise said that she was concerned about caring for her two-year-old daughter, and wondered how easily her child could assist with any kind of diabetes emergency. She also cited concerns about how wearing a device would affect her confidence in moments of intimacy. Tiana started on a pump soon after her diagnosis, and adding a CGM to the mix happened soon after adding the pump. “As with anything going on with your body … there are a lot of stigmas about how we portray ourselves and how we 'should' look, and I remember so vividly, having this internal battle [along the lines of] 'I know this doesn't look great. It's not very appealing. I know there's going to be people that might look at me differently.' There are even still days now where I wear my insulin pump proudly, but I don't want people to assume that I am incapable of doing things.”
Cherise noted that she uses Loop (a community do-it-yourself closed loop system), and that using Loop made her feel more engaged with her care. Tiana said that devices and technology are all she's known since being diagnosed with diabetes, so her memories of multiple daily injections remind her that management with devices affords her more freedom and more convenience with diabetes. Kyle is also using the DIY Loop system and feels that any device or therapy that affords him more freedom is the goal.

Have you experienced diabetes device burnout?
“Device burnout is so real,” said Tiana.  “Sometimes I just don't have the energy to get up and walk downstairs and change everything. There's a lot that goes into it; it's time consuming. Sometimes you just don't want to do it. But at the end of the day, I know I'm very fortunate to have devices.”
Cherise said she doesn't take pump breaks because she's burnt out, but because she needs to retune and refine her diabetes skills. “Sometimes we become so dependent on devices that when one of them breaks … we're like 'oh my gosh!'” She reinforced the fact that she personally needs to make sure she knows how to manage her diabetes without devices every now and again.

What advice would you give to someone who was thinking about starting a device?
Tiana said, “Do research. Make sure that you do thorough research because … once you get this device, you're locked in for four years. It's great to reach out to people to see what they like, but my recommendation is to do what works for you.”  Cherise echoed the need for doing your research on what device you want. “When it comes to the point where you want to change your device, make sure you do your research, weigh out the pros and cons because what works for you today may not work for you tomorrow.” Kyle reiterated Tiana and Cherise's points on research. Korey rounded out the topic by recommending that people with diabetes who are thinking about different devices to use the comparison features on to help you make your decision.