Where Do I Belong?
October 28, 2020
Early in 2019, I received news that I have LADA diabetes* (a form of type 1) instead of type 2. I can still vividly remember the day when I received a message from my endocrinologist at the time - "Welcome to the type 1 club!"
I remember crying in my car and calling both of my parents, and wondering where my place in the diabetes community was. My job was – and continues to be - to grow a community for people with type 2 diabetes, where they can learn about the disease and how to manage it without feeling patronized. It's my responsibility to build an environment free of stigma and shame, where individuals with type 2 can be open about their triumphs and challenges. Part of the reason I felt so qualified to do that was because I was living with type 2, or so I thought.
For a while, probably a few months or so, I struggled internally with the feeling of belonging, which seemed to be the theme of 2019 for me. Adjusting to a new city, new job, new diagnosis, learning new things about diabetes in general - it's safe to say finding my place was both literal and metaphorical. I didn't know if I was still part of the type 2 community or part of the type 1 community. Did people with LADA have their own community?
Where did I belong?
For me, that year was about knowing my experiences as a person with type 2 diabetes were valid. A misdiagnosis didn't take away nearly two years of that life from me. 2019 was also about accepting my LADA diagnosis, learning more about type 1, and what I needed to expect in terms of different treatments (mostly insulin needs). It wasn't until late in the year that I started feeling comfortable saying I have type 1 diabetes.
In my opinion, type 1 and type 2 diabetes are more similar than they are different. This isn't to downplay the seriousness of either disease; both are serious in their own right. But we both share complications, we both have challenges with access, we both deal with stigma and shame, we've both had our share of battles with insurance companies and health care providers.
And we both just want a space to talk about the ups and downs of the disease without being trivialized.
Other than being referred to try insulin pump therapy (which I believe people with type 2 should have access to), I don't feel different because I have type 1. I feel like I've grown because I simply know more about diabetes itself. The knowledge I've gained about the latest technology, research, medicines, and concepts are things all people with diabetes have a right to know. If anything, I'm more upset that people with type 2 aren't given the same level of attention and education as people with type 1.
People with type 2 deserve to know about and have access to diabetes technology, including pumps and continuous glucose monitors, the value of endocrinologists and diabetes care and education specialists, and more. Personally, I struggle with getting some devices, but because of my healthcare team and other people in my support system, I'm in the best position than ever to advocate for access to them. All people with diabetes deserve this; we deserve more than just to be given pamphlets and sent on our merry little way.
I'm grateful for this dual perspective. It's helped me connect with others who question whether they've been misdiagnosed. In a way, I feel like I'm in a great position to bridge the gap in diabetes education between T1D and T2D communities.
Oh wait, I forgot to answer the question:
Where do I belong?
I belong right here. Right here in the diabetes community with you, helping whoever I can with whatever resources I have.
And I'm not going anywhere.
* Latent Autoimmune Diabetes in Adults (LADA), sometimes referred to as type 1.5, is a form of autoimmune diabetes. It occurs because the pancreas stops producing adequate insulin, and often progresses more slowly than type 1 diabetes.
T'ara is a Nutrition Educator from Baltimore, Maryland. She was diagnosed with type 2 diabetes in July 2017 at the age of 25. Since her diagnosis, she has focused her academic studies and career on diabetes awareness and living a full life with the disease. She's excited to have joined the Beyond Type 1 team to continue her work. In 2019, T'ara discovered she'd been misdiagnosed and actually has LADA. Outside the office, T'ara enjoys going to the movies, visiting parks and hiking with her dog, listening to BTS, and cooking awesome healthy meals. T'ara holds an MS in Nutrition Education from American University.