Type 1 | Living with a lifelong diagnosis
By 2050, five million people in the United States will have type one diabetes compared to the 1.25 million that currently live with it according to JDRF’s, the leading non-profit organization that funds type one diabetes research, website.
Science and the Stigma
Diabetes is where the body can’t regulate blood sugar and glucose levels. There are two different types of diabetes: type one and type two.
Type one diabetes, (T1D), is “an autoimmune disease in which insulin-producing beta cells in the pancreas are mistakenly destroyed by the body’s immune system. T1D seems to have a genetic component and can be diagnosed early in life but also in adulthood. Its causes are not fully known, and there is currently no cure. People with T1D are dependent on injected or pumped insulin to survive” JDRF says.
Whereas type two diabetes is normally developed later on in life. JDRF states that type two “can be due to genetic predisposition or behavior. T2D is a metabolic disorder in which a person’s body still produces insulin but is unable to use it effectively. It can be managed with diet and exercise or medication. More serious cases may require insulin therapy.”
Although they are both forms of diabetes, they are very different and are treated as such. Junior Business Administration Major Christian Stafford, who was diagnosed with type one diabetes in sixth grade, says anytime he tells others about his T1D he gets responses like, “oh my grandma has diabetes” or as Junior Nutrition Major Kendra Turner adds, “you’re not fat.”
The misconceptions about type one just start with the confusion between the two types of diabetes. “I either get people thinking I can’t have any sweets at all, which I can, or people say I am lucky because I have to carry around simple and complex sugars to eat when my blood sugar goes low,” Stafford adds.
You can’t neglect it, there are major side effects to being too low or too high.
“When your blood sugars get low you shake vigorously and can have seizures and when it spikes up, you can go into a coma,” Freshman Leontre Griffin explains.
The average age to be diagnosed with T1D in the United States is 14 years old according to the endocrine website.
Griffin was diagnosed in fourth grade. Immediately after being diagnosed, “I felt different and that I wouldn’t be like a regular kid anymore. My mom was freaking out and thinking this would hinder me and everything I wanted to do in life and I had a nurse who told me that everything would be fine if I just took care of my body and myself,” Griffin says. “The last few days in the hospital, I was walking around and saw another diabetic and pretty much told him what that nurse told me, that is when I decided to not enjoy diabetes, but live with it.”
Stafford was diagnosed the day after Christmas in sixth grade. “My parents knew that T1D could be a possibility, but wanted to wait until after Christmas to take me to the doctor, so it didn’t ruin the holiday season,” Stafford says. “I was playing outside with my younger brothers in the little snow we had in Federal Way, and I must have had high blood sugar because I just remember waking up later still in the snow. That is when my parents decided to take me in the following day.” Stafford remembers his last piece of candy as a non-diabetic. “My parents gave me licorice from Trader Joe’s and the rest is history,” Stafford adds.
Turner was diagnosed in January of 2011 while she was in 8th grade. “I had really bad social anxiety right after being diagnosed,” Turner says. “I was so worried about having a low [blood sugar] and having to eat like five fruit snack packs all at once and have people stare at me…I even had special arrangements to show up late to some classes and sit in the back.”
A common theme with type one diabetics after being diagnosed is not sharing their diagnosis with others. “I used to put my pump in my pocket and cut holes for my tubing so no one ever saw it,” Stafford says. “I even dated a girl for over four months without her knowing that I had T1D.”
“I used to just tell people I was sick and never got into my diagnosis for a long time,” Griffin adds.
Day to Day
Griffin takes PULSE through an average day with his diabetes. “Basically, I wake up in the morning and make sure my blood sugar is regulated,” Griffin says. Morning carbs then provide the energy to go about his day. “I go to class and make sure I have a snack with me. I also make sure my blood sugar is on the higher side. Then I work out and immediately eat a carb load because I know my levels will get low from the workout.”
The differences between men and women with T1D is primarily the placement of the pump. “I keep my pump in my bra because girl’s pockets are not large enough and if it falls out and pulls, the sight where it is attached in my body hurts, so I know it won’t move in my bra,” Turner says. “So sometimes I just have to reach down my shirt to pull it out if I need to check my levels or administer insulin.”
Stafford is a wide receiver on the CWU Football team. “Practice is the major kink in my day to day or week to week when it comes to managing my diabetes,” Stafford says. “Usually if I have a bad adrenaline high during practice, I start this cycle of my blood sugar going high and then dropping low which is not helpful with my overall management of my health.”
“The Dark and the Light”
With any life-long diagnosis, there comes good and bad times, Stafford refers to them as the dark and the light.
Griffin recalls a time where he was not able to get test strips for a month and a half due to the cost of the strips after insurance. “I just had to feel when I was high and low. I am just grateful I have insurance, I don’t know what would happen if I didn’t,” Griffin says. Griffin has also had a few seizures at CWU this year. “My roommates now know why I have them and know how to help,” Griffin adds.
Having T1D can ruin some of the little things that others without diabetes enjoys. “My roommate will drink juice out of the container and it makes me cringe,” Stafford says. “When we have lows we are force fed juice, fruit snacks and raw honey. It ruins those items for me.”
Playing on a D2 collegiate football team is already a huge commitment, not only to add the job of managing your insulin levels. “It affects me more mentally than anything. I have had it since I’ve started playing football and had a love for it, so there was no football before I had T1D, they just go hand in hand,” Stafford says. “There’s always this stigma that as a T1D, you cannot play sports or at least play them well and people use T1D as a crutch. I have had my fair share of missing stuff for my T1D and it is frustrating, whether it be a low blood sugar or high blood sugar. For me, getting awareness for a coach to be empathetic and understand what I am going through or teammates and people in general not see it as a disadvantage. Just getting the word out about T1D will be a huge deal.”
Griffin adds that he has had track teammates in the past think he had to sit out for an exercise or run as an excuse. “People thought I was faking it or didn’t want to do the activity, when I physically could have gone into a seizure because of how low I was and needed insulin.”
Experiences are not all bad though. Seattle Sounders forward, Jordan Morris, held an event May 6 for type one diabetics. Stafford was able to not only attend the event, but was able to talk to meet Morris as well. “We both were diagnosed the day after Christmas and both have a T1D tattoo,” Stafford says.
There seems to be an instant friendship connection when two type ones find each other. “Just meeting people like [Stafford] and being able to talk to them and have them completely understand what you have to go through is a huge deal and I advise that other diabetics reach out when you feel ready,” Turner says.
T1D does not have a cure and people with it rely on insulin to survive. Fifteen minutes before eating, you have to take insulin in order for it to be affective. “I eat the same thing every day so I figured out how much insulin to take for breakfast. I’ll have a bowl of frosted mini wheats and I know that 21 mini wheats is 46 carbs plus half a cup of milk and sometimes coffee so it’s usually like 65 carbs,” Turner says.
Insulin is necessary, but “food is our medicine,” Stafford adds.
The supplies needed to manage your diabetes are extensive and in result can get expensive. “One little bottle of 50 test strips are $100 with insurance,” Stafford says. And that is only one of the many items type one diabetics have to have on them at all times.
Each diabetic is different and not all advice works for people. “For the longest time, I did not want to hear any advice from anyone. People telling me to get involved and go to camps as a teen pissed me off,” Turner says. “My best advice is to listen to yourself and know when to reach out and talk to other diabetics and doctors, but it does not have to be right away. It took me seven years,” Turner adds.
Stafford reaches out to everyone who is not diabetic and suggests that “you be an ear and not a voice. Sometimes you just want to hear ‘you’re right, that sucks’ and not be told all these solution to a problem that is not going away.”
Programs and Outreach
The center for information and community support phone number is
American Diabetes Month is in November
The Stop Diabetes, is a movement to help people in the fight against diabetes.
JDRF.org, educational website as well as non-profit to raise money for research to find a cure.