10 Tips for Living with Type 1 Diabetes

Imagine living your life one way for 22 years and then, abruptly, having your life change completely in a matter of a week. I don't have to imagine—instead, I can tell you from experience. At 22, I was diagnosed with Type 1 Diabetes (T1D) after nearly dying. Within a mere few days, I had to learn what T1D is and how to manage it for the rest of my life. Keep reading for my experience and learn 10 tips for living with diabetes. If you live with T1D, my story might sound similar to your own.

My Story

I was a healthy, happy 22-year-old, but over the course of six weeks in early 2017, my health had slowly been declining. I was losing weight for no reason, losing hair, passing out, and feeling exhausted.

I was constantly thirsty despite drinking 16 water bottles a day, and eventually, couldn't lift my own bodyweight enough to stand up.

I was barely conscious enough to understand the world around me. In what initially felt like the flu was actually my body shutting down.

I was taken to an urgent care facility where they ran several tests. The next morning, I woke up to my mom at my house saying she was taking me to the emergency department. On March 24, 2017, I was diagnosed with Type 1 Diabetes.

My diagnosis consisted of spending a week in the ICU in diabetic ketoacidosis. Within just six days, I had to learn the complex workings of diabetes and how to manage it if I wanted to live a long, healthy life.

At first, I was embarrassed for people to find out, but this is now a part of me. I think my embarrassment stemmed from the stigmatization of diabetes in public health, social media, and popular culture.

I'm no longer embarrassed, and instead, I'm an advocate for insulin affordability, T1D awareness, and public health campaign communications.

What is Type 1 Diabetes?

Type 1 is an autoimmune disease where your pancreas stops producing insulin completely. Insulin is a hormone created by beta cells in the pancreas, known as islet cells. Doctors and researchers aren't sure what causes the immune system to attack, but general ideas include catching a virus. It is not hereditary, but it is genetic. There is nothing someone can do or not do to increase their chances of a diagnosis—meaning no diet or exercise plan will cause or prevent Type 1 Diabetes.

In a healthy human without diabetes, insulin is released to convert carbohydrates, both simple (sugar) and complex, consumed into energy for the body. In T1D, the immune system attacks these insulin-producing beta cells. so individuals rely on synthetic insulin every day to stay alive.

Without insulin, the body runs out of energy very quickly. The brain stops being able to think; the body becomes weak and unable to move. This is called hyperglycemia, or high blood sugar. With high blood sugar (BS), there is too much sugar in the bloodstream and not enough sugar being converted to energy for your body and other organs.

Without insulin, some can die within a matter of days.

Conversely, if someone injects too much insulin, the outcome is the same: a person could fall into a coma and die within hours. This is called hypoglycemia—where too much sugar in the bloodstream is converted and the blood sugar becomes low.

The life of a Type 1 Diabetic is a balancing act of trying to do what a healthy body should do by itself, only in this act—the outcome of not injecting correctly, meaning too much or too little insulin, is death.

With that said, Type 1 Diabetes is a manageable disease. While there is no cure, T1D can be regulated through the use of synthetic insulin administered via multiple daily injections (MDI) or an insulin pump. People with T1D can live long, healthy lives with proper care. Check out my ten tips below for living with T1D.

10 Tips for Living with T1D

1. Learn what Type 1 Diabetes is and how to manage it. While there isn't a cure, T1D is a manageable condition.

2. Identify the signs and symptoms. You could save a life! Common symptoms include:

   1. Thirst

   2. Increase urination

   3. Fatigue

   4. Ketones in urine

   5. Fruity breath

   6. Rapid weight loss (I lost 30 pounds in six weeks!)

   7. Hair loss

   8. Vomitting

3. Learn the common terms.

   1. Carbohydrates (carbs)

   2. A1C - hemoglobin A1C

   3. Hypoglycemia

   4. Hyperglycemia

   5. Continuous Glucose Monitor (CGM)

   6. Insulin pumps & supplies:

      1. Pump site

      2. Cartridge

      3. Tubing

4. Learn carb counting! Learning how to find nutrition menus is critical to administering the proper amount of insulin to cover the carbs you consume. Another tip is finding out your common meals and estimating the carb count.

5. Invest in technology if your budget allows. Living with T1D is expensive, but technology has made living with this disease so much easier. I recommend looking into an insulin pump and a CGM.

6. Find and always carry your favorite snacks!

   1. Find carb-free snacks that you can eat without needing to bolus.

   2. Always carry sugar/snacks for when you go low! It is bound to happen, and likely at inconvenient times, so I recommend finding your favorite go-to snack and always carry it with you. My favorites are Capri Suns and Welches' berry fruit snacks.

7. Find a good support system. Living with T1D is taxing on not only the body but on your mental health, too. From questioning, "why me?" to feeling overwhelmed, having a good support system is crucial to your success.

   1. Find a primary care physician (PCP) and an Endocrinologist (an MD who specialized in diabetes and the endocrine system).

   2. Lean on your family and friends.

   3. Find a diabetes educator! Educators are specially trained registered nurses (RNs) who can help support you in learning how to carb count and onboard with an insulin pump or CGM.

   4. See a therapist. Therapy is for everyone, and you shouldn't feel stigma for seeking mental health support.

8. Speaking of mental health...it’s okay to have bad days! Just like everything in life, you'll never be perfect. Instead, work on developing healthy coping skills and accepting your diagnosis.

9. Advocate for yourself. Type 1 Diabetes is a chronic condition recognized by the American Disability Association (ADA). Employers offer work accommodations, and schools, including K-12 and universities offer school accommodations. From 504 plans to the Center for Disability and Access department at universities, there are advocates here to help ensure you succeed.

10. Traveling with T1D...make a packing list! Type 1 shouldn't stop you from experiencing life. Develop a packing list with all of your supplies, extra insulin, and everything else you need to manage your care while you travel.

Stay Tuned!

Do you or someone you know live with T1D? Living with Type 1 Diabetes is hard enough without feeling embarrassed or stigmatized by it. It's important to normalize disabilities and eliminate ableism in our society. We can each do this by becoming educated about differences we share, including disabilities like T1D, educating our friends and family, and refrain from making insensitive jokes.

Are you sick of me yet? I hope not! In the coming weeks, I'll be sharing more information on the top 10 tips I shared above! Be sure to tune in next week or subscribe! Follow me on social media, @DesDiabetes, for more updates and resources!