No Sugar Coating: Ally Talks Type 1 Diabetes

 On both her blog and Twitter, Ally talks diabetes the same way she takes her coffee–very light, no sugar. The 2015 Stanford Medicine X Scholar shares with us the frustration of misconceptions about  type 1 diabetes that spread like wildfire on social media.

Ally- HealthiVibe blog photo-squareBy the time I arrive at work each morning, I have already pricked my finger to check my blood glucose, calculated the carbohydrates in my breakfast, best-guesstimated the proper medication dosages, and injected two different types of insulin- all while running on broken sleep, for type 1 diabetes never stops to rest. Throughout the day, I will perform these actions many times over, walking the diabetes tightrope that is easily jostled by high or low blood glucose values.

The thousands of needles- although often unpleasant- are the “easy” part of diabetes management. The misunderstanding and stigma of diabetes perpetuated by misleading media headlines are what I find to be difficult.

We have all seen the Facebook meme displaying a large piece of birthday cake with the word “DIABEETUS” written across the image and ten thousand “likes” finding humor in a very real struggle. While I like to laugh just as much as the rest of us, this display does not qualify as a joke to me. In the past year, we have lost many young, innocent lives to delayed diagnoses and treatment of type 1 diabetes. There is nothing funny about the raw emotion their families and friends are left to feel.

Type 1 diabetes is an autoimmune condition. The perfect storm of genetic, environmental, and viral triggers are thought to potentially cause the disease. Diabetes is NOT caused by eating cake. If it were, we would all be diabetic at this point.

Every day, parents have to pin down their screaming children while they inject life-sustaining medication at each meal. Doctors and nurses stay late with their patients, tweaking insulin regimens and care plans. People living with diabetes have never had a day off, because this disease requires constant vigilance. While we can do anything- go to grad school, write books, run marathons- we must do so with the inconvenience of safely managing blood glucose levels 24/7/365.

These people display the strength behind life with diabetes. A lame Facebook meme of chocolate cake with a misspelled disease label does not represent who we are.

Although educating society on the truths of diabetes is challenging, diabetes advocates answer a moral call to do so. If others are tired of hearing us talk about diabetes on social media, I would ask them to consider how we feel as the people who live with diabetes every day. Stigma contributes to delayed diagnoses and treatment of diabetes, and it can negatively affect research funding. Our goals are to improve the lives of diabetics and to ultimately find a cure; stigma is not part of the equation.

Healthcare communities, both online and offline, can help us to channel our energies into something purposeful. Our efforts are worthwhile if we save one life by teaching others, or if we make the world a more accepting place for future generations who may encounter diabetes.

Ultimately, I want the next generations to eat birthday cake without thinking twice about diabetes (or even “diabeetus” memes). I hope that my future children and grandchildren can savor the frosting and the sprinkles without having to be poked by large needles whenever they eat. I pray for peace for the families who have lost loved ones to diabetes, and for society to remember these heroes with the respect and dignity they deserve.

Until there is a cure, diabetes advocates will continue to talk about why we need one. We will put a true face to the diabetes name, rather than allow stigma to define us.

Thank you for listening today and being a part of the solution. We need a cure, and step 1 is humanizing the way we talk about diabetes.

Thank you, Ally, for sharing your informative post with us!

If you have a story to share with our readers about participating in a clinical trial, overcoming adversity or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Click here to get started sharing your story now!

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