‘I hate this damn disease’: Diabetes patients share their stories

When asked what it’s like having diabetes, Tyrone Carr doesn’t mince words: “I hate this damn disease.”

Molly Lowery, a college student who was diagnosed with Type 1 diabetes at age 12, says the condition contributed to self-image problems as a teen.

When she got married, Amanda Remnant felt her insulin pump detracted from the picture-perfect wedding she’d hoped for.

Bob Klumpp had high hemoglobin A1C levels, but brought them under under control through a diabetes prevention program.

All four shared their experiences as part of the AOA’s OMED Public Health Seminar. Here are some of their insights.

Ask questions

New diabetes patients shouldn’t be afraid to call on physicians’ expertise, the group agreed. “You really have to ask a lot of questions—be as ignorant as possible,” Carr advised. Remnant agreed, noting that the complexity of the disease requires patients to take initiative: “You can’t rely on your doctors to think of everything.”

Keep things in perspective

“If I’m doing everything right and I check my blood sugar and see a high number, I get stressed,” Carr related. That’s Remnant’s first reaction too, she said, but she strives for an acceptance-and-action approach: “You get mad for a second, but then you go do something about it, like climbing the stairs a few times.”

Support matters

Carr joined a support group for people living with diabetes, which he found very valuable. Klumpp credits his family and health care team with helping him make the lifestyle changes that prevented him from developing diabetes. His support system included the lifestyle coach in his prediabetes program; his wife, a nurse; his sister-in-law, a dietitian; and his three children, who inspired him to stick to his goals.

Health care experiences can be frustrating

When Lowery began drinking alcohol in her late teens, she was honest about it with her endocrinologist. “I was hoping for answers,” she related. “But the reaction was more like, ‘Why are you doing that? You shouldn’t be doing that.’” She recommends physicians be sensitive to the realities of patients’ lifestyles.

Remnant expressed frustration with being referred to specialists without being given much indication of urgency. “Many times the physician will say, ‘I can’t really speculate,’” she explained. “So I have no idea at all whether this thyroid is a big deal or not.” Appointments with specialists can take months to book, she said, so it would be helpful to know whether she should accept a date six months away, or push for an earlier visit.

Managing diabetes is ‘a full-time job’

Lowery keeps detailed records of how she’s managing her blood sugar so she can see what works and what doesn’t, especially when she exercises. “I could eat the same way and do the same workout at the gym and get a different reading every day,” she explained. Klumpp tracks the fat and calorie content of all his meals, even though he travels frequently for work. For Remnant, a mother, having diabetes is not unlike parenthood: “It’s always there, always taking up mental space. It’s a full-time job.”