Being chronically ill but wanting to make a difference: the balance.

Three years ago today, I spent my day in a traditional Lakota sweat lodge. Two days prior, I had walked away from my corporate job with zero fallback plan.

Already in the midst of a major autoimmune crash, I was also doing work that was breaking my soul. I had been hired as the wellness communications specialist for a 15,000-employee company. The job description was everything I loved – creating messaging and programs to support and inspire health, educating around nutrition and wellness. What my position ended up being was spinning the company’s new high deductable healthcare plan. I could’ve just created the messaging being suggested to me – “Here’s all the ways this will be great for you and your family!”

Because I’m me, I instead started digging. I started running the numbers myself. I started going back to the vendors and actuaries and asking them to give me real-life scenarios I could illustrate so people could at least plan for what was actually coming. I found that, for anyone with any kind of chronic issue – asthma, diabetes, high blood pressure, depression, etc. – this plan was going to run them into the ground financially within the first three months of the year. It was a plan designed to cover emergency needs for otherwise healthy people. It was a plan designed to save the company money, not take care of its people so they can keep doing their jobs. Continue reading “Being chronically ill but wanting to make a difference: the balance.”

What it’s like to watch people die from your disease.

My immune system attacked my body when I was 10, resulting in a loss of ability to make a crucial hormone called insulin, which turns the food you eat into fuel for your body. Without insulin, the sugar from your food compounds in your blood stream, quickly poisoning you from within.

Before 1921, this event was a death sentence. The only “treatment” was starvation. Even over the last few decades, being diagnosed with this autoimmune disease meant shorter lifespans and drastic changes in what life could look like. Outcomes weren’t great. Complications were inevitable.

Technological advancements have made it so that I, by being born at the right time and into privileged circumstances, can not only live, but can live the life healthy-me would’ve lived too.

But the reality is, people still die from complications of type 1 diabetes all the time. And whenever I hear stories of it, I break down. When people die from this disease, it’s rarely from their own negligence. It’s mostly from simple mistakes – not realizing that what felt like the flu was actually diabetic ketoacidosis. Not waking up from a low blood sugar and dying in your sleep. Miscalculating how much medicine or food you would need when you’re out and about. Or, also commonly, from not having the money or resources to afford what you need to survive. Continue reading “What it’s like to watch people die from your disease.”