What People with Type 1 Diabetes Want You To Know

“No diet, shake, pill, exercise regime, cleanse, or herb can make the body start making insulin again.” That’s what the mother of a seven-year-old boy with type 1 diabetes wants you to know.

It’s incurable, it’s tedious, it’s scary

Type 1 diabetes (juvenile diabetes) is an autoimmune disease with no cure. Dorrie Nuttall knows this all too well. Her son, Luke, has been dealing with diabetes since he was only two years old. She’s not a fan of articles that speak of “reversing” or “preventing” type 1 diabetes. Her mission is to show the world what type 1 is and to present the real facts about this disease. “That it is incurable, that it is tedious, that it is scary at times, that no one should have to live like this, and more importantly, no one should have to die from it.”

Diabetes is not a single disease, but a group of diseases. According to the American Diabetes Association, only about five percent of people with diabetes have type 1. It can develop at any age, but is usually diagnosed in children and young adults. In type 1, the pancreas is damaged and can no longer produce insulin. The cause is unknown and there’s no known prevention.

You can’t outgrow it. You can’t reverse it with diet or exercise or weight control. You can’t live without insulin. You have to think about your disease and monitor your health every single day — or risk your life. You can’t take a break from type 1 diabetes.

Children still die from type 1 diabetes

“Children still die when they are misdiagnosed or not diagnosed in time,” Dorrie told me in an email. “This is devastating and completely preventable, but the way diabetes is portrayed in the media as a lazy or obese person’s disease is the very reason parents, doctors, and teachers don’t know the warning signs for type 1. They believe it doesn’t apply to otherwise ‘healthy,’ active children.”

During the night, young Luke doesn’t always wake up when his blood sugar is dangerously high or low. But the family‘s service dog, Jedi, is trained to alert Luke’s parents when that happens — and it does happen.

Jedi was trained by the nonprofit Canine Hope for Diabetics. Dorrie shares Luke’s and Jedi’s story on her Facebook page, Saving Luke-Luke and Jedi-Fighting Type 1 Diabetes Together.

“I believe showing our truth — the needles, the struggles, and the sleepless nights — will help people understand and be more compassionate towards our fight,” she said.

Dorrie’s concerns about type 1 diabetes go well beyond her own household. “In some places in the world where people are poor and the medical community doesn’t have access to insulin like we do, the life span is from seven weeks to seven years. It’s a tragedy that over 90 years after the discovery of lifesaving insulin, parents still have to watch their children die from type 1 diabetes.”

It’s an incredible emotional and mental balancing act

Adam Brown, senior editor for diaTribe.org, has type 1 diabetes. He describes it as a roller coaster. “Filled with ups and downs, surprises around every corner, and moments where I fear for my life. Part of that ride is an incredible emotional and mental balancing act:

  • Fighting to stay on top of my blood sugars vs. Letting diabetes take over my life;
  • Keeping high standards for myself vs. Becoming my own worst critic;
  • Having a routine for better predictability vs. Rejecting spontaneity and fun;
  • Learning from past mistakes, planning to be safe in the future vs. Forgetting to live life in the present.”

Adam says these pressures bring daily feelings of frustration, failure, and guilt. “My key to success is finding bright spots — what do I do when things go well, and how can I do those things more often?”

“It’s not exactly living a lie, but there are serious elements of that.”

Kelly Close, founder of The diaTribe Foundation and president of Close Concerns says life with type 1 diabetes is a mix.

“On one hand, it has brought significant challenges to almost every aspect of my life. Despite having diabetes for nearly 30 years, I still struggle with high and low blood sugars virtually every day. Injections hurt way, WAY less than they used to, but they still sting and every time I give myself one, I still feel my body is betraying me. Nighttime low blood sugars are still scary, especially when I am alone. Sometimes I think I’ve got it figured out, and other times I feel like I’m walking a tightrope blindfolded. In order to do well, I have to skate close to the edge. And, I almost always want to hide that — it’s not exactly living a lie, but there are serious elements of that.”

Kelly believes living with diabetes has helped her develop greater empathy for others. Rather than being a barrier to her achievements, she calls it an impetus to some of the most rewarding experiences of her life.

“Ultimately, diabetes does bring its set of true hardships, but I also really believe that to some extent, you learn more and have a better life if you have to work harder. There is a limit to that I haven’t hit because I’m lucky to have access to great doctors, educators, medicine, technology, family, and friends.

“If I were to give advice on how to talk to someone with type 1 diabetes, I’d ask them to avoid expressions of pity or judgment, and to acknowledge, appreciate, and learn more about the complexities of living with diabetes.”

To learn more about type 1 diabetes visit jdrf.org or diabetes.org.

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Image Credit: Thinkstock

231 comments

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Jeanne R8 months ago

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Jeanne R
Jeanne R8 months ago

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Jeanne R
Jeanne R8 months ago

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Jeanne R
Jeanne R8 months ago

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Jeanne R
Jeanne R8 months ago

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