Type 1 diabetes: Not something to hide

When she was 8 years old, Molly Schreiber broke out with a horrible case of poison ivy. Strangely, as the poison ivy started to clear up, she became lethargic, she lost her appetite, and she began drinking more water. After several trips to the pediatrician, Molly and her parents still had no explanation.

Molly’s father had been diabetic (type 1) since he was a child, so he decided to test her blood sugar one morning. A normal blood sugar reading would be between 70 and 100 mg/dL. Molly’s was a whopping 284. She was immediately admitted to the hospital and diagnosed with type 1 diabetes. That was 27 years ago.

Looking back, she doesn’t remember being scared or shocked. “I think I was feeling so horrible that I just wanted to feel normal again,” she explained. She immediately started testing her blood sugar, took multiple daily insulin injections, and used urine strips to test for ketones. She recorded all her results in a paper log book that she would take to appointments with her endocrinologist. She recalled, “If I didn’t test, and was supposed to, I would make up a number. My endocrinologist could easily figure out which ones I had made up, so I didn’t do that for very long!”

Having grown up watching her father test his blood sugar, take insulin shots, and even suffer through some bad bouts of low blood sugar, she knew quite a bit about the disease. Still, she kept her diagnosis very private. “I didn’t test my blood sugar in front of others, especially my friends. Shots were done in the bathroom in private,” she said. Although it shocks her to think about it now, back then Molly didn’t even take her glucometer to school. “I think I was being a typical pre-teen who didn’t want to draw any unnecessary attention to herself. I remember trying to get out of an overnight field trip with my class because I didn’t want to have to be public with my disease.” Luckily, she had a wonderful teacher who made her feel comfortable throughout the trip.

Nowadays, her glucometer is always close at hand. “To be honest, having type 1 is just part of who I am. I don’t need to be reminded to bolus [take extra insulin] for meals or to check my blood sugar; it comes naturally,” she explained. However, having type 1 can make her feel limited at times: “I can’t be as spontaneous as I want. I can’t just go for a run, and I definitely can’t go anywhere without having something with me to treat an unexpected low blood sugar.”

Switching from insulin shots to an insulin pump has been helpful. Molly first tried the pump almost 15 years ago when she was pregnant with her son. Her endocrinologist suggested it, promising she could stop using it after she had the baby. However, just one month on the pump won her over, and she has been using one ever since. She currently uses the Minimed 530G, which integrates an insulin pump and continuous glucose monitoring into one device. She believes it’s important to be educated on all of the various treatment options. It’s also possible to try out many different insulin pumps to see which works best with your lifestyle.

Though an insulin pump is convenient, “Every time I get dressed, I have to figure out where it’s going to go. If I wear a dress, it’s a big annoyance to me,” she said. Having continuous knowledge of her blood sugar levels has also challenged her self-esteem, but she has learned not to take the number on the device’s screen personally. “I’m not my blood sugar,” she stated. “Sure, I may have miscalculated carbs or made an error in judging how much insulin I had on board, but I’m still who I am. It’s not a reflection of how good of a person I am.”

Molly’s husband has learned that her mood can be a sign of low blood sugar: “I get annoyed when my husband remarks that he can tell I need to eat because I get in a bad mood…even though he’s right, it drives me crazy!” Nevertheless, it’s usually helpful that he knows Molly may get emotional when her glucose level drops really low, and that she’ll need a few minutes to get herself back together. “He knows that’s not me, it’s my blood sugar,” she said, adding, “He advocates for me…he’ll get me a glass of orange juice at any hour of the night.” He even makes sure that when she is in the hospital, the staff don’t give her intravenous fluids containing sucrose, as they tried to do after her two caesarean sections.

Molly also has the support of her family and friends, who have become educated about type 1 diabetes, which helps prevent misguided assistance. “There is nothing worse than someone telling you that they know all about your disease and when you have a low, they bring you Diet Coke,” she said. Unlike regular Coca Cola, Diet Coke has almost no sugar. As a result, it isn’t much help to a diabetic whose blood sugar levels are too low.

Naturally, her father also talks to her about her diabetes — sometimes too much. “I don’t really like to discuss my disease in depth,” she explained. “There are a lot of other things to talk to family and friends about!”

What advice would she share with someone who has just been diagnosed? “It’s important to not hide your disease. I wish I had worked on this sooner,” she said. “Not only are you educating others about type 1 diabetes, but there is nothing like seeing someone else with a pump on, out in public!”

By Kathleen McGuire Gilbert