#T1DLooksLikeUS

I don’t talk often about my Type 1 diabetes. I’m not sure why. For many decades, I have dealt with it. I talk about every other aspect of my life, probably too much. I’m not ashamed of having diabetes. I don’t feel like it is a weakness. I’m not embarrassed to have a medical device attached to me. I don’t believe that friends or dates will shy away from me because of it.

So, why don’t I talk about it?

Is it because I try to forget? Maybe, but you can never forget.

Is it because I don’t identify foremost as a person with diabetes? It is true that I have many titles that come above diabetic, namely daughter, sister, aunt, friend, doctor, and human.

Is it that I don’t want to burden someone else with feeling bad for me? Yaaas.

Overall, I deal with my disease on my own. The most interaction I have with someone “in the know” is my quarterly visit with my endocrinologist, who is now a friend. Other than that, I plug away alone. I don’t have any close Type 1 friends and I never sought out any support groups.

This past week, I start to share my story with some strangers. And they GOT it. And it feels good.

First, I came across a podcast called Diabetic Tim. Tim started his podcast simply to help T1Ds connect with each other and tell their stories. I am hooked.

Then, I find Real Life Diabetes, where people with Type 1 diabetes talk to and about people with Type 1 diabetes. I love listening to other people who also have my disease discuss my disease. Amber and Ryan don’t sugar coat it. They are straight up and honest and they curse. The hosts don’t give the guilt-laced answers that often we get from the non-diabetic medical community. They advocate that the disease isn’t our fault and that most of us are striving to do our best. I feel an immediate kinship, a one-sided friendship, an adoration from afar.

Suddenly, I am in the loop. On a work trip that lasts four days, driving 15 hours, through three states, I listen to every Type 1 podcast I find. I finish Real Life Diabetes and Diabetic Tim. I complete Type 1 Run (even though I am no longer a runner), and Diabetes Connections. Every single show is about Type 1 diabetes. Type 1!

It’s much more common to hear about type two diabetes. To clarify the difference, Type 1 is an autoimmune disease. At some point, my body noticed my pancreas and said: “We don’t see you as  friendly any longer and now will destroy you.” Goodbye pancreas and the ability to process carbohydrates; hello injected insulin. Type two diabetes is when the pancreas still produces insulin, but the hormone doesn’t function as well. It is related to being overweight and sedentary. Oral medications are used to help the body better process carbohydrates. Type 1 is irreversible as the necessary cells are dead. In some cases, patients can reverse type two with diet and exercise. Type 1 makes up 5% of diabetics and Type Two makes up 95%. You can understand how my Type 1 can be underrepresented and misunderstood.

After finding these podcasts, I instantly acquire a tribe! I don’t even know I am missing it. It’s like that moment when you fall in love. You walk around in your own life, fine and happy and oblivious. Then, you meet someone and fall in love. Your life never reverts back because now you have lifted the veil and you are aware of those feelings.

I am in love with the Type 1 diabetes online community (DOC). I follow T1Ds on Instagram. I like their Facebook pages and I read their blogs. I sign up for their e-newsletters. I join their Facebook groups. I read their forums. I join the JDRF (Juvenile Diabetes Research Foundation). Finally, I go to a T1D meet-up.

And they love me back! They are receptive and responsive. Social media diabetics follow me. They answer my emails. Most call, offering help with anything I need. They help me find support meetings. Some have me as a guest on their podcasts. They tell me their stories and listen intently and knowingly to mine.

We are committed to each other. We are “in a relationship”.

There is something uniquely wonderful about being understood on a deeper level. “I was soooo high last night.”… My last A1C was 8.”…“My CGM has been stuck in the loop for days.”…“Damn, if I could just get rid of all the doorknobs in my house.”…“Juice box, anyone?” Type 1’s immediately understand every single word. They literally and figuratively speak my language!

For those non-T1Ds, “high” doesn’t mean “on drugs”, but a high blood sugar. The A1C reading is a quarterly blood test that tells you how well controlled you are and the goal is under 7. A CGM is a continuous glucose monitor. It tells you your blood sugar, but it can get stuck in a loop of asking for blood sugars to calibrate it. Doorknobs are the pump wearing T1D’s nemesis. The tubing seems to find the knob, wrap around it, and then rip out your cannula, which is the flexible needle under your skin. And children’s juice boxes are a common, portable way to treat low blood sugars.

This community understands when someone asks you if you want a piece of pizza, that there are at least 10 questions in your head. These factors affect how much insulin you will need and if you should eat the pizza.

1. How many carbs are there? What is their glycemic index?

2. Will I need to use a fast-acting bolus or a square bolus?

3. How much fat is in the pizza and how long will it drag out the high blood sugar?

4. How much fiber is there to subtract from the carb count?

5. When is the last time I ate? And how much insulin is still in my bloodstream?

6. Did I exercise today and will that endorphin effect still bring my sugars down?

7. Am I going to exercise later and will I need extra carbs for that?

8. Do I have my period and will I need to give a little extra insulin because of that?

9. Am I upset or stressed and do I need to adjust my insulin dose for that?

10. How close to bedtime is it? Do I want to be up all night with high blood sugar alarms? Or low blood sugar alarms? Or because I am peeing all night?

It is called “decision exhaustion” or “diabetes burnout” and it is a real thing. T1Ds must make 180 extra decisions daily. The burden of those decisions over time causes burnout. I am excited to know that that IS a thing. Now I know why every few months, I need to let myself fully feel overwhelmed, square up, and move on yet again.

This community reinforces that every high blood sugar isn’t my fault. They struggle too and that means that it is the DISEASE and not ME! I am trying to do the best I can, just like they are. We are doing this awkward diabetes waltz together. They understand that this disease has some wonderful aspects to it, but sometimes, it gets the best of us.

That’s right… us, unified, together, supporting each other.

#T1DLooksLikeUs.