It seems that every couple of years or so the unethical price of insulin gets a spotlight. Every time it happens, I wonder how the consumption of this information (sometimes, misinformation) impacts non-diabetics. Does it incentivize people to learn more? Does it drive them to take action? Does it offer empathy for those dealing with the shit show that is managing Type 1 Diabetes in America?

I recently listened to a Terrible, Thanks for Asking (I love Nora McInerny) episode called “After the Headlines” about the real people and trauma behind news headlines we read. I couldn’t help but make a connection between that episode (highly recommend – go listen!) and the headlines about insulin the past few days. It’s good timing, given that today is #worlddiabetesday.

People tend to have a lot to say about diabetics. I’ve often felt as though the more people informally know about diabetes, the less they feel a need to listen to diabetics. That the news article or the secondhand story they heard is enough information to infantilize and ignore those who live it. Over the years, I’ve researched how rhetoric, discourse, and perception of our disease influences very tangible realities like the burden of care and our mental health.

In May, I hit 28 years with diabetes. It’s taken me all of those years of living with it to fully comprehend the emotional, mental, and physical load it’s taken. There were times I wasn’t sure if I’d make it this long – not because of the disease itself, but because of the countless traumatic experiences trying to afford my medication and dealing with our healthcare system. I cannot tell you how many times I’ve gotten off the phone with a healthcare provider, nurse, insurance rep, pharmacists and said to myself: “they don’t care if I live or die – they just want me off the phone so they can say their job is done.” There have been exceptions, but, overall, the systemic treatment of diabetics has communicated a clear message to us: “we don’t care about you and we know more about your disease than you do.” That’s a hard message to constantly receive. And as a person with comorbid diseases who’s actively involved in other patient communities – it’s a message that so many people with rare and chronic illnesses know well.

It’s possible there are diabetics in your life who have had very traumatizing experiences just trying to survive. If you want to educate yourself, start with patient advocates and advocacy organizations who center diverse stories about our experiences. Learn more about the history of insulin, various types of insulin, coupon programs, and how we can better connect patients to cost-saving solutions that should be readily available. Most importantly, I urge you – let us be the main character of our stories. Let us tell you what we need to take care of ourselves, and support us via agency, compassion, and advocating for an equitable health system that provides us with affordable medication and treatment options that ease the burden of our care. Not exacerbate it.

I will be posting more about my journey throughout November (Diabetes Awareness Month) and releasing my podcast! Stay tuned.

In the meantime, here are some stellar places to start learning more:

• Beta Cell Podcast
• Beta Cell Foundation
• Diversity in Diabetes
• Miss Diabetes Education
• Access and Affordability Project
• Rx4Good