Making Lemonade from Lemons: Meet the Osers, for Whom Diabetes is a Family Affair

Apr 4, 2020, 16:37 PM

By Hope Warshaw, MMSc, RD, CDE 

The expression, “When life gives you lemons, make lemonade,” encourages optimism and positivity in the face of life’s challenges. For sure, the diagnosis of diabetes can be a life challenge. For our Tandem Blog series, Making Lemonade from Lemons, we’ll profile people with diabetes (PWD) who’ve squeezed lemons from the diagnosis of diabetes and made lemonade - they exemplify this expression. These PWD make living with diabetes just a bit easier for everyone and show the world just how well PWD can live. 

This profile features a family affair! Sean Oser, a family medicine physician and diabetes researcher has had type 1 diabetes (T1D) for over 30 years. Sean’s daughter, Jessica, a fraternal twin, now 17, has had T1D for over 10 years. Tamara Oser, also a family medicine physician and diabetes researcher, is a supportive spouse and mother, and does not have diabetes. (She does have celiac disease and notes that feeding her family is super fun!)  Courtney, Jessica’s twin, has lived with family members who have iabetes her entire life and thus has a unique perspective. Sean and Tamara have been married 23 years, and have experienced medical school, residency, becoming parents to twins, and managing their careers. One last factoid about the Osers; a year ago they embarked on a career-enhancing cross country move for Sean and Tamara from Penn State College of Medicine in Hershey, PA to the University of Colorado School of Medicine in Aurora, CO, as their twin daughters entered their senior year in high school. 

Q1. Hope: Sean, please share a few details surrounding your diabetes diagnoses.  

Sean: I was overseas during my senior year of high school (1989) shortly before my 18th birthday, watching a March Madness basketball game on the US Armed Forces television feed. It was the middle of the night local time. Instead of commercials, they aired public service announcements. One was about common symptoms of undiagnosed diabetes. I remembered excessive thirst. Two months later I had an unquenchable thirst and frequent urination. I asked a local doctor about these symptoms. He skeptically checked my urine and then sent me to the nearest city for a blood test. The diagnosis was diabetes, but I didn’t require hospitalization, thanks to my awareness of the symptoms from that public service announcement. I caught the next plane back to the US, was whisked to a doctor and took my first insulin injection that evening. I quickly confronted mortality and the unknowns of T1D.  

Q2: Tamara, when did you learn that Sean had diabetes? Do you remember how you responded? Also, how did you respond to Jessica’s diagnosis of diabetes? 

Tamara: I learned Sean had diabetes before we even started dating. I remember the first time that we ate together at the cafeteria at the National Institutes of Health, where we were both spending time conducting research between college and medical school. He just pulled out a syringe and explained that he had diabetes and had to take insulin when he ate. He made it so matter of fact and was really open. I have always loved to learn and was always fascinated by the human body. It’s likely the combination of Sean’s openness and my inquisitiveness that led to diabetes never being a barrier as we started to date. 

Learning Jessica had diabetes was very different. We were on our way to a camping trip. Jessica said she was very thirsty multiple times during the car ride. Out of caution, I checked her glucose before we went to a faraway campsite. The meter read “critical high” and the floor fell out from under my feet. I checked my glucose. It was 96. We checked Jessica’s glucose one more time. It still read “critical high.” We were lucky. We knew the symptoms and had access to a meter. She wasn’t in DKA and wasn’t hospitalized. However, her diagnosis was very challenging for our whole family even though we had lived with Sean’s diabetes from the start.

Q3: Sean, did having diabetes factor in to your becoming a physician, particularly a family practice physician? 

Sean: Absolutely! I always wanted to become a physician, having grown up with lots of exposure to my father’s work as an ophthalmologist. Not surprisingly, I wanted to be an ophthalmologist, too. Diabetes changed my perspective and broadened it in ways I never expected. I was struck as I saw family physicians partnering with people with diabetes and assisting them through whatever came their way. After that, I didn’t want to limit my work to a single condition or a single organ system. I wanted to help people with whatever condition they might have. That’s the opportunity that being in family medicine provides.

Q4. Fast forward. Tell us how you fit diabetes into your busy life today? 

Sean: Diabetes has fit into my busy life for over 30 years, so it just feels like business as usual. However, now, instead of a two-minute glucose test first thing in the morning, I can just glance at my phone or pump to check my status. And now that I’m using a hybrid closed loop system, I wake up in the low 100s almost every day. I also have many fewer lows that wake me during the night. They simply happen less often. Diabetes is such a big part of our family’s life, and we don’t let it stop us from doing anything we would have done without diabetes. 

Q5: Tamara, how do you balance the roles of spouse and mother of people with type 1 diabetes? What have been your guiding principles? What are your words of wisdom for others in a support role? 

Tamara: Well, I’ve certainly made many mistakes! It has been interesting to see how much Sean’s and Jessica’s diabetes and living with diabetes differ. Offering diabetes support to Sean looks totally different than what it looks like to Jess. That’s taught me to not make assumptions, but to have open conversations about how you, as the mother and spouse, can help. I remember shortly after Jess was diagnosed, I felt guilty that I had never noted the carbohydrate counts on Sean’s lunches. I truly hadn’t understood carb counting until I had a child with T1D. So, assuming I was being helpful I started making him lunches with the grams of carbohydrate noted. He hated it! When I got smart enough to actually ask him how I could help him with his diabetes, instead of making assumptions, he told me that if I was awake correcting Jess’s glucose during the night that he would love it if I corrected his as well.  Asking is crucial!

Q6: Tamara and Sean, please provide a brief description of the diabetes research you do as family medicine physicians, along with the setting in which you practice family medicine? 

Sean: Not long after Jessica’s diagnosis I discovered online peer support. I had been looking for informational and motivational support years earlier, but didn’t find it. The questions I had couldn’t be answered by my doctors because they were non-medical, more about managing life with diabetes. I had stopped asking. Then, as a person with diabetes and Dad of a daughter with T1D, I found people like me, looking for answers to the same questions. Tamara found the same thing as a parent and spouse of people with T1D. We turned to online peer support as researchers and our worlds opened up. We found opportunities to examine what types of information are shared, how information is shared, whether and how it’s beneficial, and whether and how any of it is unsafe. That’s what we’ve done. As our research, and that of others, has progressed and shifted, and as we’ve met more and more amazing diabetes advocates and peer support researchers, we’ve both chosen to make diabetes an even bigger part of our professional lives. This has made our already busy lives much busier, but we’re committed to this for the incredible diabetes community that we’re now part of.
 

Tamara: Early in my career I taught medical students and residents and conducted educational research. When Jess was diagnosed, I found the diabetes Peer Support Communities (PSC), including JDRF and Children with Diabetes. Through my involvement in these organizations I heard about many unmet needs and barriers. I also observed examples of resilience and strength. Helping people with diabetes and their families became my passion. At the time, I had a fantastic mentor. I told him about my new passion and desire to change my research focus. His advice was, “look at your lab.” I realized my “lab” was people living with diabetes and their families. Since then I’ve been conducting research on the value of peer support, social media and diabetes technologies in primary care.1,2,3,4 I have also designed and lead a course that taught medical students the challenges of living with a chronic disease (using T1D as an example) through reading and discussing personal blogs. As part of my new role at University of Colorado, as Director of the High Plains Research Network, I now practice in rural Colorado and visit practices throughout the eastern third of the state with a goal to improve the health of those in eastern Colorado. It has been humbling to see healthcare teams provide excellent full spectrum care, often with very few resources. 

Q7: How do you, as a family, minimize having diabetes care play prominent role in your lives? How do you make sure your other daughter without diabetes feels included?

Sean: This is a challenge and not one I have always done very well! Technology has helped reduce some of the effort as it allows more room for the rest of life and a little less focus on diabetes. Jessica’s diabetes has demanded a lot of parental attention, especially the younger years. There was no way to prevent Courtney from receiving comparatively less attention than Jessica. Recognizing that, I tried to be deliberate about making Courtney feel important in our lives - special, loved and supported. However, it has always been an uphill climb, because even some of those deliberate efforts were interrupted by Jessica’s diabetes (or mine). 

Tamara: A principle we live by is that diabetes does not ever stop us! Shortly after Jess was diagnosed, we traveled to Disney World for a long weekend just to prove that we could do it, and that her having diabetes would not prevent us from traveling - one of the things we most love to do. We’ve hiked into the Narrows at Zion, Garden of the Gods in Colorado Springs (see the family photo above), snorkeled with sharks while on a Galapagos adventure, trekked Machu Picchu---all with diabetes tagging along. Our motto is, “It’s how you WILL do something with diabetes, but never that you can’t do something due to diabetes.” Diabetes is something that has brought our family closer together and helped us learn how to support each other. I truly feel both of our girls are the amazing humans they are today in part because they have lived with diabetes in their lives.
 
Q8: How has utilizing peer support and connecting with others who have diabetes made a difference in how your family manages diabetes? How do you want to let others know why and how to engage with peer support opportunities? 
 
Tamara: Peer support is crucial. We were lucky to attend the Children with Diabetes Friends For Life gathering shortly after Jess was diagnosed. Our family hasn’t missed this annual conference since. We also got immediately involved with JDRF. There’s no replacement for learning from and being surrounded by other people and families who just “get it.” I have seen this so profoundly in each member of my family. Attending Children with Diabetes shortly after Jess’s diagnosis, talking with other parents, and seeing thriving adults with T1D was simply soul cleansing. It empowered me to know that we could do this and that we were each going to be fine. We learned countless tips and tricks we never would have learned from our healthcare providers. Courtney participated in the sibling program for years. Although I knew it was invaluable to her, this became crystal clear when she told me she applied to be sibling volunteer staff this summer. She told me that being with other siblings had helped her so much that now that she wants to give back and help others.
 
Q9. How do you suggest people discover opportunities to engage locally, nationally or internationally to connect, participate in and serve the community?
 
Tamara: Jump in! The diabetes community is like no other I have observed or been engaged with. The people are wonderful and eager to provide peer support. There are so many amazing organizations to join. Start with your local JDRF chapter, or any in-person groups offered where you get your diabetes care. Choose a targeted online peer support community based on the information and support you want. Although it is always best practice to discuss the information you find with your healthcare providers, our research showed that medical misinformation was quite rare, and that the online community often corrects it themselves.5 
 
Q10. Hope: Thus far, what has been your biggest glass of lemonade about having diabetes?
 
Sean: Without a doubt, helping advance scientific knowledge about peer support, especially online, and bringing it to more healthcare providers, and through them to more people with diabetes and their caregivers.6  In the past couple of years, we’ve focused our research on how to get the life-changing, advanced diabetes technologies to more people who have less access to specialty care through the  primary care workforce.7
 
References: 

1. Oser TK, Oser SM, Parascando, JA et al. Social media in the diabetes community: a novel way to assess psychosocial needs in people with diabetes and their caregivers.Curr Diab Rep. 2020;20:10. 

2. Oser T K, Minnehan KA, Wong G, Parascando J, McGinley E, Radico J, Oser SM. Using social media to broaden understanding of the barriers and facilitators to exercise in adults with type 1 diabetes. J Diabetes Sci and Technol. 2019:13(3):457-465.  

3. Oser SM, Stuckey HL, Parascando JA, McGinley EL, Berg A, Oser TK. Glycated hemoglobin differences among blog-reading adults with type 1 diabetes compared with those who do not read blogs: cross-sectional study. JMIR Diabetes. 2019;4(2):e13634. 

4. Litchman ML, Walker HR, Ng AH, Wawrzynski SE, Oser SM, Greenwood D. Oser TK. State of the science: a scoping review and gap analysis of diabetes online communities. J Diabetes Sci and Technol. 2019;13(3):466–492. 

5. Oser TK, Oser SM, McGinley EL, Stuckey HL. A novel approach to identifying barriers and facilitators in raising a child with type 1 diabetes: qualitative analysis of caregiver blogs. JMIR Diabetes 2017;2(2):e27. 
 
6. Warshaw H, Hodgson L, Heyman M, Oser TK, Walker HR, Deroze P, Rinker J, Litchman ML. The Role and Value of Ongoing and Peer Support in Diabetes Care and Education. The Diabetes Educator. 2019;45(6):569-579.
 
7. Oser SM, Oser TK. Diabetes Technologies: We Are All in This Together. Clinical Diabetes. 2020;38(2): cd190046. https://doi.org/10.2337/cd19-0046.
 

If you’re a person who believes you’ve made lemonade from your diabetes diagnosis, or if you know someone who has, let us know at community@tandemdiabetes.com for a chance to be featured.

Author Bio: Hope Warshaw, is a Registered Dietitian and Certified Diabetes Educator. She has spent her career involved in diabetes care and education and has authored several books published by American Diabetes Association (ADA), including Diabetes Meal Planning Made Easy. She was President of the American Association of Diabetes Educators (AADE) in 2016. She actively and passionately promotes the value of peer support to people with diabetes, caregivers and healthcare providers. 

Hope Warshaw was compensated by Tandem Diabetes Care for her contribution on this topic. However, she created the content and it is based on her personal knowledge, experiences, and observations.

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