Twelve-year-old Nikki Webb was on vacation with her family in the Grand Canyon the first time they realized something might be wrong. Out in the middle of nowhere, Webb’s father was driving 100 miles per hour trying to get to a gas station. Webb remembers having to pull over about12 times to go to the bathroom and throwing up the next night before having to go to the hospital.
A normal blood sugar level is 80 to 120. Hers was over 1000. She was diagnosed with Type 1 diabetes and rushed to the ER.
“I was pretty much on my death bed,” says Webb.
Since Webb’s diagnosis, she has had to poke her fingers four to eight times a day and take insulin six to eight times a day.
Webb is in the minority when it comes to her type of diabetes. According to the American Diabetes Association, in 2012, 29.1 million Americans had diabetes. Approximately 1.25 million American children and adults have type 1. Webb is now a 20-year-old college student and, while she is now fully educated about her diabetes, it is a constant burden that others are not. For Webb, it is both physically and mentally troublesome for her to not have those around her understand what her disease and day-to-day life consists of.
She doesn’t mind explaining her type of diabetes to those who truly want to understand. However, Webb is still often bombarded with the same questions and comments by those who think they get it when they don’t. She says that since people are more familiar with type 2, she gets people asking her why she isn’t fat or if she got diabetes from eating too much sugar. People with type 1 diabetes need to count carbs and take insulin accordingly. One of the most frustrating things for Webb growing up, and to this day, is people giving her sugar free food that still contains carbs, which will sky rocket her blood sugar levels and make her sick.
“People do this, and I’m like ‘Time out! That’s the other type! My pancreas is caput. Dead. It doesn’t do anything,’” says Webb. “It can get really scary when my levels are out of control, and people around me don’t know how to help.”
Type 1 diabetes means the pancreas is no longer capable of producing insulin. Type 2 diabetes is when the body does not make enough insulin or use it well. There is also gestational diabetes that occurs when a woman is pregnant and goes away after the baby is born.
What Webb informs the people who get it wrong is that eating too much sugar cannot result in her type of diabetes. According to the American Diabetes Association, type 1 diabetes is caused by genetics and unknown factors that trigger the onset of the disease; type 2 diabetes is caused by genetics and lifestyle factors. Webb says the general public tend to know diabetes just as diabetes. They are either unaware that there are different types or only have all the facts for type 2, which is more common. While an unhealthy lifestyle can lead to type 2, there is nothing anyone can do to prevent type 1.
Another common misunderstanding is that diabetes isn’t a serious disease. This stems from the fact that eating a cupcake can literally save a life if blood sugar levels go low. It also comes from the idea that the disease is curable by having a healthy lifestyle. While good control over the disease can lower health risks such as kidney failure, blindness, and nerve damage, type 1 diabetes is serious and does not yet have a cure. According to the American Diabetes Association, diabetes causes more deaths a year than breast cancer and AIDS combined and nearly doubles the chance of having a heart attack.
It’s not just peers that Webb has a hard time explaining her condition to. Webb was furious when her doctor told her she wasn’t going to be able to play sports again. She says they were floored that she was playing division three softball and basketball even when there are many famous sport players, like NASCAR driver Ryan Reed, and rock stars, like singers Brett Michaels of Poison and Nick Jonas of the Jonas Brothers.
Sarah Schalk has had to deal with professionals not understanding her condition and not helping her with one of the only support systems that was available to her.
“My mom fought every year in my old school for me to get a 504 plan that would support me with test taking and having teachers not fail me if something were to unexpectedly happen to me,” says Schalk. “The people in charge said that I didn’t need it. I actually had a teacher who was ‘diabetic’ too, supposedly, call me lazy to my face and to my mom’s.”
It’s normal for people not to understand how much type 1 diabetes affects the day-to-day life of a person who has it. Aside from taking too much or not enough insulin, exercise, stress, menstrual cycles, common colds, and eating late at night are just some of the things that affects Webb’s blood sugar levels.
“My blood sugar crashes when it’s hot outside,” says Webb. “Seriously, everything affects it. It would be nice for days when I come in for an exam, and my blood sugar is super low or sky high, for them to postpone it for like an hour or two so my blood sugar can get back to normal and then take it.”
Just like having a gym buddy to work out with or study sessions for school, it’s beneficial to have a support system when going through something as trying as a chronic illness. It’s challenging for Webb to keep on track of her levels without a local support system. She knows nobody else around her with her condition and has no access to any kind of support group on campus.
The only time Webb felt fully understood and in control was at the Wisconsin Lions Camp for youth with diabetes in Rosholt. Webb attended camp the last two years she was allowed, when she was 15 and 16 years old.
“Diabetes camp was the best week of your entire life,” says Webb. “You could be normal for once. They never limited what we could do there. They totally need it for adults.”
Nicole Casperson, a former volunteer and Trading Post Secretary at the camp, says it’s a shame that camp ends when the campers turn 16. There are so many obstacles and changes that happen between then and the beginning of college. Since most people with type 1 diabetes, previously called juvenile diabetes, are diagnosed at a young age, it is that much more important for them to be accepted and understood.
“I wish there was some sort of reunion system, at least until the first year of college,” says Casperson. “I think it’s so important to have that support system throughout your whole life because type 1 will never go away. I think when entering college, a type 1 diabetic is introduced to so many responsibilities that having a group of people who understand the extra struggle that you carry, as well as provides ideas for taking care of yourself or making self-care easier, is invaluable.”
Casperson remembers her first year of college when she and a group of students got together to learn something new and was criticized for not wanting KitKats. The push back continued until she explained that she didn’t want to raise her blood sugar levels. This experience embarrassed her and has ignited an activist state of mind in her ever since.
“The academic resource coordinator went on to explain that if I basically changed my outlook on my health that I could change my cells and get rid of diabetes,” says Casperson. “This of course is not true, and this person was speaking from the experience of having an aunt with Type 2. I was just appalled to be talked over by someone who didn’t have the knowledge of the disease like I did, and that this person was hired by the university to help students learn but could not stop talking when he did not actually know the correct information.”
November is National Diabetes Awareness month. That being said, there was nothing on or around campus recognizing it despite the number of diabetics of both types on campus. I see the red sharps boxes in several bathrooms on campus. I know you’re here.
There is no limit to what Webb can do in her life, but there are always setbacks. According to the American Diabetes Association, if somebody is not educated or wants to know more about the disease, thank them and tell them what to look for in case of a low blood sugar level. Encourage them to join you and the American Diabetes Association to get involved and raise funds for a cure, as well as education and advocacy programs that help people with different types of diabetes.
“It’s as easy as differentiating between the types,” says Webb. “It makes all the difference to us.”