Meet Josh, Janine, Mila, Ryan and Kylene. Five people living with type 1 diabetes (T1D) who come from different backgrounds and generations but can relate to each other through their disease. This group of individuals get candid as they discuss how living with T1D has affected every part of their lives; from the physical demands to the emotional toll, and the unrelenting burden of managing their disease.
Check out the entire video or jump to the time stamps below to hear more on specific topics.
Loss of Independence
“One of the ways type 1 diabetes has limited my independence is just being afraid to be alone”
For many with T1D, their days are not just consumed with managing their disease, but with navigating complications. The group not only chats about the physical burden, but the emotional one that comes from feeling a loss of independence at the hands of T1D. For many, this spreads into aspects of everyday life that are universal — from being able to drive to the store to interviewing for a new job.
Listen to this conversation between 1:48 – 4:09.
Support Systems
“It’s so beautiful when the people you care about most get so invested”
T1D impacts not only the individual but also those that care about them. For these individuals, their families, friends and partners have taken on some of the burden as they step into roles that support them in managing their disease. It really takes a village.
Hear from the group on this topic between 4:10 – 5:20.
Impact on Career
“That’s adulting with an illness”
In addition to the routine management of T1D, living with this disease also means factoring it into all large life decisions. The group dives into how they’ve navigated the additional level of complexity brought on by T1D when weighing options of relocation and career moves. They explain some of the limitations they’ve faced due to their disease management.
Check out 5:21 – 8:40 to learn more.
Misconceptions and Self Advocacy
“I feel like the thing I wish people knew is that it is so hard, but we make it look really easy”
There are a lot of misconceptions around T1D in the community, in society and sometimes even in a provider’s office. Understanding what those misconceptions are and how they’ve affected different groups is crucial to changing that narrative in the future. For patients, being truly heard by their provider and feeling confident that providers understand their individual needs is just as important as their treatment. The patient/provider relationship plays an important role in successful disease management.
Scroll to 8:41 to understand patient perspectives on this.
Misdiagnosis
“You can sit in a professional's office, and they are supposed to come in unbiased. They're supposed to come in looking at you as an individual, and then it can result in something as severe as being misdiagnosed.”
Breaking stereotypes and biases in health care is an important step toward ensuring patients are correctly diagnosed. In T1D, looking beyond the physical presentation of patients is key to identifying the right disease management tactics.
Hear more on this between 10:50 – 13:42.
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