Finding Common Ground in the Diabetes Community

11/27/19
WRITTEN BY: Bill Santos
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This is one part of a two-part series on allyship in the diabetes community. Read Beyond Type 1 Leadership Council member, Lauren Salko’s article on the importance of kindness among people with diabetes. 


Bill Santos has been living with Type 2 diabetes since 2018. A year after his diagnosis, he found an online community and began voicing his experiences about Type 2 diabetes, including the misconceptions people, including those with Type 1, have about this form of the disease. In this article, Bill shares his views on how Type 1s and Type 2s can find common ground in the diabetes community.

What did you learn this month about diabetes, in general?

In general, I learned that being a person with diabetes does not have to be a lonely existence.

What perceptions about Type 1 Diabetes did you gain? Was there something about Type 1 you learned during Diabetes Awareness Month?

I don’t think I learned anything new (I still have hope, the month isn’t over yet), but I have been reminded that people with Type 1 Diabetes are thoughtful, caring people that are not always perfect.  

What do you see as the main issues between the Type 1 + Type 2 communities? How can they be resolved?

Probably the biggest issue I see between the Type 1 and Type 2 communities is how we deal with, speaking generally, the “sugar causes diabetes” attacks.  For instance, when confronted with a statement like “drinking the latest holiday frappuccino will give you diabetes,” it has been my experience that many Type 1’s will respond “people with Type 1 Diabetes have an autoimmune disease, and cannot get diabetes this way.”  Although true, the structure of this response leaves doubt if Type 2 Diabetes can be brought on by drinking a sugary beverage. While research suggests there are links between sugary drinks/snacks and Type 2 diabetes, they are not the sole causes of diabetes. In fact, there are a multitude of factors, including genetics, that contribute to insulin resistance, and therefore, Type 2. So please never assume because one chooses to indulge in a tasty beverage, that they’ll get diabetes as a result. That is hurtful to people with Type 2 diabetes.

No matter the type, we all have struggles with keeping our blood sugars in range, and it is difficult if people within the diabetes community don’t have your back. Type 2 Diabetes is not a “lifestyle disease.”  This is not “The Matrix.” There is no red pill or blue pill. We need mutual respect and to support each other. 

What are some similarities between people with Type 1 and Type 2 you’ve found? How can we better work together to amplify those similarities, while respecting each other’s differences?

What I find that both Type 1 and Type 2 people share is the diabetes experience.  We both deal with grief in a very personal way. Almost all of us remember the person we were before diagnosis, and it is really hard to confront that the person we were before is no longer who we are.  We all deal with disappointment, mostly associated with numbers that don’t meet our expectations. We are all acutely aware that diabetes can be a disease that comes with judgment and prejudice in the larger society.  And to close on a positive note, we all quietly celebrate those little successes we see from time to time. When our actions, numbers, and programs all fall into place, and for a little while, we feel normal.

What are some aspects of Type 2 diabetes you want people with Type 1 to know? How can they be a better ally of people with Type 2 diabetes and promote awareness about Type 2? 

People with Type 1 Diabetes should understand that getting Type 2 Diabetes is all about risk management.  It is not a lifestyle disease, it can’t happen by eating ice cream. Risk factors have to be managed, however, some of these are beyond the control of the individual.  For instance, age is a risk factor for Type 2 Diabetes. No one can control that, but as we age, we should manage other risk factors that we can control more closely; eating well, keeping active, etc.  

In addition, regardless of the mechanism that caused diabetes, the mental and emotional effects are equally problematic for Type 1’s and Type 2’s.  To use a physical analogy, Mt. Denali and Mt. Kilimanjaro are in two very different parts of the world, but at the summit of each mountain, you would need very similar gear, regardless of the climate in the foothills of each mountain.  With Type 1 and Type 2 Diabetes, we started in very different places, but between our ears, things can be very similar, and we should build on that common ground.

Are there any Type 1 accounts and friends you’d like to shout out? 

I have met so many wonderful Type 1 people online, and I feel awful if I left anyone out, but the following are a good representation of the folks in the diabetes online community:

Scott Johnson – @ScottKJohnson

Heather Rose Walker – @Heather_RoseW

Molly Johannes – @mollyjoh_T1D

Kelly – @Diabetesalish

 



Bill Santos

Bill Santos lives in central Maryland. He loves to volunteer in his community, ride his bicycle, and going to the beach. Bill was diagnosed with Type 2 Diabetes in February 2018 in his 50s. In early 2019, Bill became an advocate for people with diabetes by being outspoken on social media about the challenges people with diabetes face on a regular basis, sharing his own experiences, and how the lives of people with diabetes can be improved by medical professionals. In August 2019, Bill started his blog, Next Wave T2D, where he continues to share his journey.