Living with Type 1 diabetes: How to find your joy and purpose

Tamiko Nettles
Tamiko Nettles on her Type 1 diabetes journey: "I’m always seeking spaces where people talk about diabetes and finding others to remind me that I’m not alone."

If there’s one thing I’ve learned in the past two decades, it’s that Type 1 diabetes is a journey of highs and lows — and I don’t mean just glucose levels and carb counting.

In March 2000, as a senior in college, I considered myself to be healthy. But while trying on swimsuits before a spring break trip to Miami with my girlfriends, I saw my ribs for the first time in the mirror. I asked my friends, “Have you ever noticed this about me before?”

Around this same time, I started to feel sick frequently. Everything I ate tasted like paste. Shortly after the bathing suit incident, I went out to dinner. I don’t remember what I ordered, but when it arrived, I couldn’t eat. I also had to use the restroom multiple times. I went back to my dorm room and ate everything sweet I could find.

I knew for sure something was wrong. My mother and sister took me to the emergency room, where I learned my blood sugar was dangerously high and that I weighed 96 pounds. “You should be in a coma right now,” the doctor said to me.

Tests revealed I had Type 1 diabetes, a chronic, autoimmune condition. My body wasn’t producing enough insulin, a hormone to help my cells use glucose (sugar) as energy. Too much sugar in the blood can cause damage to a person's organs. The diagnosis meant I would need to take daily insulin injections and monitor my glucose levels for the rest of my life.

My first reaction was denial. Then anger. It was a day that came out of nowhere — and one that I don’t want anyone else to experience.

Still, 20 years later, with God’s strength — and my diabetes care team — I am doing well. I’m still here! Here’s what I have learned, and what I tell others to remember when faced with Type 1 diabetes.

1. Nurture your inner strength

If you have been newly diagnosed with Type 1 diabetes, I promise you will find reservoirs of strength you didn’t know you had. In the beginning, I had to give myself pep talks. “Yes, you can do this, Tamiko,” I would say while giving myself insulin injections. “You can put a needle in your body.” That was a hard one for me to overcome. Today, it’s something I don’t think much about.

2. Let go of what you can’t control

Every day and minute with Type 1 diabetes is different. There are ups and there are downs. There’s no consistency with the disease, and that can really drive home just how little control I have. For me, the big realization was that I have to depend on something bigger than myself. Yes, there’s the medicine, but it’s really my faith I rely on. It’s what gets me through.

3. Be open to conversation

Diabetes is invisible. People can’t see it, and they don’t know what you’re going through — unless you tell them. It’s not easy to say, “I need your help.” But I’ve found that if I put myself out there, people surprise me in wonderful ways. We have to make space for conversations around things that people can’t see, because there is always someone else out there grappling with the same thing.

4. Find your support system

I’m always seeking spaces where people talk about diabetes and finding others to remind me that I’m not alone. After attending the Mindfulness and Diabetes event at the UChicago Medicine Kovler Diabetes Center in August 2023, I was inspired to share my story. Several panelists had Type 1 diabetes; one even had a visible continuous glucose monitor. I was like, “Yes! You are normalizing this!”

5. Live the healthiest lifestyle you can

For me, that means a more plant-based diet and a lot of cooking at home. I put in the effort to calculate exactly how many carbs are in my meals to stay within my “healthy” zone. If I don’t, my blood sugar skyrockets. Then, of course, I have to correct that. It’s a constant cycle of asking myself, “Did I eat right?” Regardless of what choices you make, make ones that are healthiest for you.

Kovler Diabetes Center

UChicago Medicine offers a patient-centered, science-based approach for managing insulin-dependent Type 1 diabetes, complex Type 2 diabetes, gestational, pre-diabetes and monogenic diabetes. 

Learn more about our expertise