Diabetes Made Her Feel Alone. Hoag Helped Connect Her to a Community.
There have been so many health decisions to make in her life, and though she had the moral support of her family and friends, Jacqueline Ellis felt somewhat alone in making them.
Diagnosed with type 1 diabetes at the age of four, Jacqueline grew up learning to read ingredients labels, plan errands around medication doses, restrict her diet and basically solve math problems every time she ordered from a menu.
“There’s a stat out there that every day, you make about 180 more decisions than people without diabetes,” Jacqueline said, quoting a Stanford University statistic that, taken to its logical conclusion, means that by the time Jacqueline was in her late 20s, she would have made roughly 1.5 million more decisions than her identical twin sister, who does not have the disease.
By that time in her life, she said she felt “burned out” by all of those extra decisions. She wanted to connect to someone who knew what it is like to grow out of a supportive childhood and into an adult contending with diabetes on her own. She was looking for someone who could relate. At Hoag, she found an entire community.
“I was in a time in my life when I was trying to figure out my identity, especially relating to my diabetes diagnosis. I have incredibly supportive family and friends, but I did not know anyone my age who had diabetes and could truly relate. So I reached a threshold of people fully understanding what I was going through,” she said. “I was feeling alone in my diabetes, and I decided to see what was available in my local community.”
Through a Google search, she found a support group at Hoag, and through the group, she found friends, events and even a new endocrinologist: David T. Ahn, M.D., Program Director and Kris V. Iyer Endowed Chair in Diabetes Care at Hoag.
“Dr. Ahn is amazing. He puts a lot of emphasis on the social aspect of diabetes,” she said. “He takes a more holistic approach to his care. To him, it is not just about treating the disease part of diabetes, but also the psychosocial dynamics of the disease.”
Jacqueline said she was referred to Dr. Ahn and the Mary & Dick Allen Diabetes Center through friends that she made at Hoag’s Herbert Program for Young Adults with Type 1 Diabetes. The program creates events for people facing the unique challenges diabetes presents in emerging and young adulthood.
“I would go to every meeting I could fit into my schedule. We talk about everything in our lives, whether it was about diabetes, jobs or our personal lives in general. It is a really social and open forum and feels like family,” she said. “I recently went to a wedding of a friend that I met through the program. I felt honored to be a part of the wedding of someone I met through such a unique sequence of events. It is rewarding to not feel so alone anymore.”
The get-togethers were social and not strictly centered around diabetes discussions, though “venting” and resource-sharing were always welcomed. For deeper dives into diabetes information, she and her friends would attend other Hoag events, including lectures by Dr. Ahn, which draw community members, patients and other experts in the field.
“People show up for him because they know whatever information he’s giving is valid and reliable,” she said. “That is why I have been a patient of his for so long, because he is the diabetic expert in my life.”
Just as impressive as Dr. Ahn’s expertise is his patient-centric approach.
“He is funny and explains things in layman’s terms, which makes him approachable,” she said. “And he will engage me about anything, he is not just isolated to my diabetes. I can talk to him about other things going on in my life.”
One of those things has been a recent career change. Jacqueline’s nephew was diagnosed with diabetes at the age of 4, and her sister credited Jacqueline’s help with making a valuable difference in their family’s lives. That profound experience inspired Jacqueline to leave her commercial real estate career and pursue nursing.
She said Dr. Ahn was very encouraging and has offered suggestions about technology she can use to help her stay on top of her diabetes while balancing school and life.
“I know I can call him and he will be there to support me,” she said. “He is somebody who gets it, and that is why he is in such high demand.”
There will be so many decisions to make as Jacqueline embarks on the next chapter of her life. Thanks to the support she has found at Hoag, she knows she will no longer feel as alone in making them.