Juicebox Podcast: Type 1 Diabetes
Episode #1446: Curious George
Host: Scott Benner
Guest: Alicia (20 years old, living with Type 1 Diabetes for 12 years)
Date: February 27, 2025
Episode Overview
This episode centers on Alicia, a 20-year-old navigating 12 years of type 1 diabetes largely independently, while contending with cultural misconceptions, family misunderstandings, and evolving self-responsibility. Scott and Alicia cover her diagnosis as a child, the challenges of growing up with minimal parental involvement, cultural pressures (notably around herbal remedies), burnout, emotional burden, care access, and her recent determination to assert control over her health. The conversation is marked by candid discussion of heavy issues (including depression and grief), practical strategies, and the importance of education, community, and persistently advocating for oneself in the health system.
Key Discussion Points and Insights
1. Diagnosis and Cultural Influences (02:10–07:00)
- Family Response at Diagnosis:
- Alicia was diagnosed at age 8; her family’s approach was heavily influenced by Hispanic cultural traditions of using herbal remedies.
- Parents and relatives promoted cinnamon, moringa, and other herbal “cures” based on anecdotal and type 2 diabetes stories.
- Language barriers and lack of accurate hospital translation compounded the confusion. Alicia became her own translator at 8.
“They would tell me, you know, take… it’s called moringa… that [it] cures diabetes… but their friends didn’t specify that they were type two.”
— Alicia, 02:33
2. Childhood Self-Management and Family Dynamics (04:09–07:00)
- Alicia was expected to self-manage her diabetes from a young age with minimal oversight—parents would prompt her to "go take your insulin" but seldom checked dosing.
- This led to episodes of overdosing insulin and subsequent unexplained lows.
- Eating out (often in Mexican restaurants) presented challenges, especially as her family underestimated carbohydrate contents and effects.
“My family’s from Mexico... Mexican food doesn’t have a lot of carbs. Realizing, like, now, I should’ve spoken up… I never got the chance to explain… maybe this is not a good choice for me.”
— Alicia, 04:38
3. Struggles with Herbal Remedies vs. Medical Necessity (06:32–11:36)
- The family’s belief in cinnamon and moringa persisted for years despite clear indications they didn’t replace insulin.
- Alicia gradually stopped the herbal regimen herself, recognizing its ineffectiveness but still shouldering the need for insulin alone.
“I just kind of stopped [herbal remedies] slowly on my own because… I still have to depend on insulin no matter what. These are not going to work.”
— Alicia, 07:06
4. Cultural and Generational Barriers (11:36–13:14)
- Persistent cultural ideas around “natural” remedies for diabetes are recognized as both confusing and dangerous when applied to type 1.
- The host and Alicia discuss stories from the wider Hispanic community reflecting a lack of knowledge—and even outright fear—of insulin.
“If you can find me one person… took cinnamon and moringa pills and it just went away magically, I would love to talk to them.”
— Scott, 11:36
5. Teenage Burnout, Crisis, and Turning Point (13:35–18:37)
- Puberty and teenage social pressures led Alicia to burnout, neglecting diabetes management (“wanted to be… normal”).
- She experienced a diabetic coma (DKA), which was misread by paramedics as ibuprofen overdose; hospital staff had to correct them, highlighting a lack of general awareness.
- This crisis spurred her mother’s increased involvement, but also highlighted boundary tensions between support and overbearing behavior.
“She [mom] became more involved… but there is a boundary.”
— Alicia, 17:32
6. Impact of Grief and Mental Health on Diabetes Control (19:45–22:32)
- Major family losses—her grandmother (mentor) and godfather (missing)—led to grief-related depression and further neglect of self-care.
- Alicia candidly discusses how her coping mechanism was “giving away the diabetes,” knowingly letting her management lapse (“I wanted to give up. Not like hurt myself… maybe if I just stop the insulin, that’ll fix it for me”).
“You had more to think about than you had space for.”
— Scott, 21:48
7. Self-Education and Support Systems: The Shift (22:42–32:29)
- Meeting her boyfriend marked a turning point; his genuine interest in her condition, willingness to ask questions, and advocacy in health appointments gave Alicia renewed motivation.
- She highlights how peer support (even just one person) changed her sense of agency.
“He’s a Curious George, definitely. He’s asked the doctors… ‘what can I do to prevent her from going high?’… He’s looking out for you.”
— Scott, 31:43
8. Healthcare Access, Insulin Resistance, and Systemic Barriers (33:04–47:19)
- Ongoing high A1C (spiking over 12), despite heavy doses of insulin (54 units of basal Lantus for ~170 lbs), leads to suspicion (confirmed by a new endocrinologist) of insulin resistance.
- Struggled with insurance as she transitioned to the Omnipod and later Beta Bionics iLet pump; issues with supply coverage, pump communication, and insurance denials prompted persistent advocacy.
- Insulin, CGM sensors, and potential GLP-1 agonists (Trulicity, Wegovy, Ozempic) were variedly denied or restricted by insurance—requiring knowledge of codes, persistence, and sometimes, relentless fighting.
“My A1C dropped from a 12 to a 9. That’s on the… the eyelet took you from a 12 to a 9.”
— Alicia, 36:41
9. Weight Gain, Nutrition, and Medication (38:15–55:35)
- Weight management became a major concern as Alicia recognized the link between high insulin doses, resistance, and weight gain.
- She and her boyfriend tried various diets, including low-carb, calorie tracking, and gym routines—with very little weight loss until GLP-1 medication was considered.
- Systemic health issues (thyroid, hypertension, family heart disease) complicate her management and drive a sense of urgency.
“The scale did not move to like, maybe three pounds, and that was about it… That’s when my new endo was like, yeah, you have insulin resistance. You need medication.”
— Alicia, 53:40
10. Navigating the Medical System: Advocacy and Assertiveness (59:13–66:46)
- Scott coaches Alicia to become her own advocate: request specific labs, assert her needs, phrase requests in ways more likely to convince doctors and insurance (emphasizing BMI, comorbid risks, etc.)
- He underscores the need for one “motivated doctor with three brain cells” to help her successfully access the tools and medications she needs, including re-check of her thyroid, trial of GLP-1s, retaining her CGM/sensor, and ongoing pump.
“Every day is dire. I need your help. I need you to help me save my life. That’s what I would say to her.”
— Scott, 65:03
11. Concluding Reflections and Community Support (64:42–67:22)
- Scott encourages Alicia to use available support systems (the Facebook group, social media), offers to help draft insurance letters, and stresses the power of persistence and community—noting that Alicia’s journey from an unrecognized, unsupported child to a young woman fiercely advocating for her health is itself heroic.
Notable Quotes and Memorable Moments
-
On cultural and familial misunderstanding:
“I got in trouble for, like, technically being a diabetic without you guys knowing I was diabetic.”
— Alicia, 25:55 -
On grief and giving up:
“I just wanted to kind of give up… maybe if I just stop the insulin, that'll fix it for me.”
— Alicia, 21:08 -
On finding support and motivation:
“He was supporting me… He knows every sound of everything. He’s paying attention. He’s doing what you asked your dad to do.”
— Scott and Alicia, 30:12–30:41 -
On health system frustration:
“Medicaid should definitely cover a CGM. I mean, there’s no way you shouldn’t be able to get your CGM… You just need one motivated physician with a pen and three brain cells.”
— Scott, 45:56 & 47:03 -
On self-advocacy:
“Every day is dire. I need your help. I need you to help me save my life. That’s what I would say to her.”
— Scott, 65:03 -
On her progress:
“Going from a 12 to a 9 is pretty awesome. Like short term it—that is fantastic for you.”
— Scott, 50:50
Timestamps for Key Segments
- Introduction of Alicia and Cultural Context: 02:00–07:00
- Childhood Self-Management Challenges: 04:09–07:00
- Herbal Remedies vs. Insulin: 06:32–11:36
- Teenage Burnout, DKA, and Mom’s Involvement: 13:35–18:37
- Impact of Grief & Depression: 19:45–22:32
- Support System Shift (Boyfriend): 22:42–32:29
- Transition to Insulin Pump and Insulin Resistance: 33:04–37:48
- Weight Management Struggles and Medication: 38:15–55:52
- Insurance Barriers and Healthcare Advocacy: 59:13–66:46
- Closing and Offers of Community Support: 66:46–67:22
Takeaways
- Cultural context and family support: Navigating misunderstood, culturally-rooted ideas about diabetes can delay proper care—but doesn’t preclude change with education, support, and assertion.
- Transition from childhood to self-reliance: Early forced independence may breed resilience, but also risks dangerous mistakes and burnout.
- Emotional and mental health are intertwined with diabetes management. Grief, trauma, and social pressures can profoundly disrupt diabetes control.
- Patient advocacy is critical: Alicia’s story highlights the importance of learning, asking for help, and—when necessary—demanding appropriate care from medical and insurance systems.
- Community matters: The role of supportive partners, friends, and patient communities (like Juicebox’s Facebook group) is transformative.
This summary captures Alicia’s journey of negotiating cultural expectations, grief, adulthood, and the health system with increasing self-agency—providing both a compelling personal narrative and highly practical insight for others living with type 1 diabetes.