PWD: Stand United
by kerri morrone sparling
But instead, I see so much divisiveness in our pancreatically-challenged community. November was Diabetes Awareness Month, which encourages people to come together and raise awareness of diabetes. In that same vein, the annual World Diabetes Day in November is recognized by the United Nations. We, as a community of people living with diabetes, should be united with pride.
In the beginning, the diabetes community was a beautiful thing. You couldn’t throw a URL without hitting a diabetes blogger, and the support was amazing. So many people, coming together to share best practices, admitting to worst practices, and everything in between. The personalities were diverse, but the common thread was diabetes, regardless of type. We were in this together, and everything truly felt warm, fuzzy, and holding steady at the emotional equivalent of a nice 104 mg/dl.
Now? Now, things have changed a bit. This community still has so much beauty, and limitless possibilities, but it is riddled with chasms, and I’m not sure of the cause.
We, as people with any kind of diabetes, have so much in common. Every single one of us knows the value, both emotionally and literally, of our A1c result. And whether we’re testing our blood sugar every few weeks or every few hours, we all know how that lancet feels when it pierces our fingertip. Everyone living with diabetes understands that their pancreas is compromised in one way or another, and that we need to adjust our lives, our medication, and our minds to manage that change.
But we also have so much that divides us as a community. I think that, even though we’re all categorized under the main heading of “diabetes,” it’s a very diverse and individualized disease. No matter how you slice it, all kinds of diabetes are complicated. Even though there are definitive types (type 1, type 2, LADA, MODY, gestational, pre-diabetes, and of course the caregivers and loved ones of people with diabetes), there are so many variables even within those categories. There’s no broad stroke definition of “diabetes” that suits us all. It’s like calling diabetes simply “a painting,” without taking into account the different canvases, paints, brushes, and styles. We’re all living with diabetes, and we manage it with a dizzying range of diversity.
Diversity is what makes our community strong, though. I’m not saying that we should all be the same, and that we should align our goals. It doesn’t matter what organization I’m supporting. It doesn’t matter where my fundraising dollars go or what walk I participate in or the color of the ribbon pinned to my shirt. Living with diabetes doesn’t mean we all have to be advocates, or that we even need to disclose our diabetes to anyone. What matters is being part of a community that, despite huge differences, rallies together to support one another when it counts.
Yet we battle. Sometimes our sides are chosen by our “type” of diabetes, despite the fact that we all are working toward the same goal of “good health.” We battle over which diet to follow, or which medication to take. We are divided over our loyalty to advocacy organizations or ribbon colors. We have heated discussions about pharmaceutical companies and cure research and what is or should be the “next big thing” in the diabetes world. We argue about who should lead and who should follow, and about “who has it worse.”
On top of that, we battle against insurance companies who deny us the tools and technology we need. We fight to cover items as sophisticated as continuous glucose monitors and as basic as test strips. And then we raise our voices to the companies creating these products, petitioning to make them more accurate, and more affordable. As people living with a chronic illness, we spend so much of our time making sure our diabetes doesn’t get the best of us that our efforts to achieve almost become efforts that fatigue.
Living with diabetes is not easy.
Which is why I become so frustrated, and disheartened, when I see people in the DOC (diabetes online community) picking one another apart instead of raising each other up. I personally have had people come after me for supporting the JDRF or the Diabetes Research Institute or the Joslin Diabetes Center, saying that I’m not focusing my efforts “the right way.” (These emails often come hot on the heels of other not-so-kind emails, saying I’m a bad person for deciding to have a child. I respect people’s opinions, but I stand by my decisions with confidence.) It’s not that we all have to agree, but we do need to re-educate ourselves about being supportive and respectful. Myself included. We don’t all need to agree. But being kinder goes a long way.
Diabetes is anything but predictable, and everyone has different agendas and goals – I understand that. Not everyone is waiting for a cure. Not everyone supports technological advances. This disease is unique to each diabetic and their loved ones, and the various communities and organizations reflect that. But I would love to see the diabetes communities mature and embrace one another instead of ostracizing and battling. We can't lose sight of the most important aspect of these communities and organizations: support. Our strength is not found in what divides us. It’s in what unites us.