As an advocate for change, it’s always important to acknowledge the barriers, hardships and difficult conversations encountered within the field. Before I was an advocate, I had to go through different experiences of trials and tribulations with my care team in both the diabetes sector and the general hospital care. I understand the lack of awareness and education around diabetes when I was being treated so harshly in the beginning of my diagnosis.
My endocrinologist was unsupportive of my journey by being too hard on me during the beginning stages of my journey and made my mental health decline every visit when I would hear non-constructive advice for diabetes management. However, the most negative and memorable experience I had was my general doctor withholding medications just because I was using a Dexcom CGM and not the traditional glucometer like he wanted. He wasn’t able to view my numbers because he didn’t have the software to connect Dexcom to the devices he had available to him. I simply told him I would no longer have him involved in managing my diabetes, which then caused a retaliation of withholding my insulin for over a week.
When this happened, I had decided enough was enough. I switched both my endocrinologist and general doctor. Once I explained the situation to my new doctor, she took off the hold and I was able to revive my medications.
Although traumatic, this made me realize how important the field of advocacy is because this can be going on in the diabetes community and no one talks about it because of the stigma and fear that arises when doing so. As I advocate within the community, I remember that we all come from all walks of life, and I need to consider the different lifestyles and even challenges we can all face. Especially in our communities of color. As someone who identifies as Latina and has a family history of diabetes, a lot of my family still did not know what diabetes truly is and how to navigate it because healthcare is both not accessible and resources are not attainable for all. When there is little guidance within diabetes care, this is when unfair treatment and misunderstanding can happen. Unfortunately, this causes the quality of care to decline for those with diabetes who need to not only survive but thrive. Keeping our cultures alive, bringing the family together to understand, and even asking for help was one of the hardest things to do living as a person with diabetes who is also surrounded by diabetes in my family.
As someone who dives deeper into diabetes knowledge, education, awareness and advocacy – I hold a certain amount of knowledge that holds meaning. After going to a diabetes conference and being a part of the Diabetes Link, I learned so much more about the field of diabetes technology, healthcare resources and community advocacy sector. Things are accessible through higher education, another resource that isn’t so easily available to our communities. That knowledge we gain in any form of education is the key fundamental component in breaking barriers and talking about the problems within our communities all around. Resources and education for diabetes care management need to be accessible. The mistakes, trials, and bad experiences allowed me to see a wider point of view of how different each diabetes journey is for everyone and how much we can learn from each other. From talking about insurance, health management, diabetes mental anguish to just overall support system, it truly brings the community together and helps one another learn so many key components to making the diabetes community excel further. The differences we have, and bad experiences we go through, can put blockages forward, but if navigated right, they can make us come together stronger than ever. Our communities of color need more accessible resources, especially in our at-risk communities such as low income, homeless populations and undocumented individuals that have even more limited access to education and/or resources. We need to stop and listen to the diabetes community, loved ones of those affected, and stories we see in all walks of life to truly understand and move together.
