- Treina Owen was diagnosed with Type 1 diabetes at 17.
- Her daughter and her son also have the condition and depend on insulin to survive.
- This is Owen’s story, as told to Kelly Burch.
This as-told-to essay is based on a conversation with Treina Owen. It has been edited for length and clarity.
When I was diagnosed with Type 1 diabetes at 17, it was very, very scary. My father, aunt, and grandparents all had Type 1 diabetes, but it hadn’t occurred to me that I could have it too, even after I was diagnosed with gestational diabetes when I was pregnant the year before.
I felt like it was unfair, having to pull out a syringe and give myself insulin for everything I ate. I didn’t know anyone my age who had diabetes, and I felt different from my peers.
I wasn’t thinking about the impact on my child, because no one had told me that Type 1 diabetes could run in families. Luckily, my oldest daughter did not have the condition. But years later, when her sister was 5, she kept waking up in the night to use the bathroom. I knew something was wrong, so I used my meter to read her blood sugar. Her levels were in the 400s, which is dangerously high. I rushed her to the emergency room. She stayed in the hospital for a week and was diagnosed with Type 1 diabetes also.
Thirteen years later, I started noticing symptoms in my son, who was 9 at the time. He had headaches and trouble concentrating in school. One night I checked his blood-sugar level, and it was in the 300s. I felt like I was going to have a panic attack because I had already been through this with my daughter. I brought him to the ER, and he was diagnosed with Type 1 diabetes too.
We’re constantly thinking about paying for insulin
Having three people who depend on insulin to survive is incredibly stressful. You’re trying to find ways to save money and your life at the same time.
We’ve been lucky to have good health insurance for much of our lives, but there is still a huge financial impact. When my son got his diagnosis, we hadn’t yet hit our $5,000 deductible for the year. So when I went to pick up his insulin at the pharmacy, I was told that a month’s supply would be $1,000. I started crying right there.
I needed to stop working because of complications from my diabetes. I’m blind in one eye and have significant vision loss in the other because of times I wasn’t able to control my diabetes properly. Leaving work meant giving up my excellent insurance. Though my husband has insurance, it’s not as great.
We’ve learned a lot about affording insulin. We search for manufacturer coupons and ask doctors for samples. There have been times when we’ve had to share insulin supplies to get by.
Once, lightning hit our house, knocking out the power. Our insulin went bad because it was not refrigerated. I had to fight with the insurance companies and the pharmacy to get replacement insulin. I was panicking, thinking someone was going to die.
We depend on technology to monitor our treatment
As a diabetic, I’m constantly getting well-meaning advice. People want to cure you with cucumbers and Oprah. Because we’re active in church, we have so many people who tell us to pray for a cure. That stirs up a lot in me and my family. I don’t need someone to tell us they’re going to pray this away.
What we need is equitable access to healthcare technology. My children and I use continuous glucose monitors and insulin pumps. My daughter is in college now, but I can monitor her levels remotely. I’ve had to call her in the middle of the night to tell her her blood-sugar levels are crashing. When my son is in school, I can make sure his levels are stable throughout the day. I don’t know what we would do without this technology. It is a lifesaving innovation that everyone should have access to.
When we go to a diabetes walk or gala, we’re often the only Black family, and yet Black people in the US are more likely than white people to have diabetes. This disease is affecting our families. I want all Black people with diabetes to have access to great care and lifesaving treatment and technology.