Frustrations with Adult Onset Type 1s

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Before you go judging me based on my blog title, bare with me for a moment. Before joining the Diabetes Online Community (DOC) a few years back, I didn’t know many Type 1 diabetics. I met a few here and there but the only one I really knew closely was my mother in law. She was diagnosed as an adult and she always made it seem like diabetes wasn’t a big deal. It could just be that when we get together, she is more interested in what’s going on with my husband (her son) than talking about our chronic condition.

I was diagnosed at age 9. I’ve had Type 1 diabetes for almost 21 years. For the past 21 years, I have struggled with the disease. Some years, I basically ignored it minus putting insulin in for meals and making sure my pump has insulin (see college years) and some years I have been super aggressive with finger pricks, changing my infusion set site and carb counting. The majority of my 21 years with diabetes, I struggled to have good blood sugars. I would always go to bed in the 200’s because I wouldn’t feel comfortable any lower because I was worried about dropping low in the middle of the night. I would stay above 100 during the day because I was worried about lows affecting my ability to think, work, study, etc.

Then I joined the DOC and I was shocked that people’s blood sugars were so well controlled. I would see people posting about having a “high” blood sugar of 180 mg/dls. 180?! That would be a great number for me! I saw people posting their CGM graphs and I was amazed at the great control. I had my CGM alert set at 240 and I was so surprised that people had their CGM alerts way lower.

Around the same time, I also met a few diabetics in real life and I think this is where my stereotype came from. These people I met in real life were on top of diabetes. They made it look easy. They were also diagnosed with Type 1 as adults. I think I also assumed the people on Twitter that were posting the great photos of their CGM graphs were also people that were diagnosed as adults.

I became frustrated with them. I had 20+ years dealing with this disease and while I wasn’t dealing with burnout at the moment, I was dealing with a general feeling of exhaustion from the 20 years of having diabetes and was jealous that these people that were diagnosed more recently hadn’t had the years of exhaustion and that was why they were kicking diabetes’ butt.

The exhaustion aside, I also felt like having had diabetes for 20 years, I wasn’t given proper re-education every so often. People that were recently diagnosed had more recent information given to them so they were able to use that information for better control. I also wondered if the newly diagnosed people were granted a longer “honeymoon” period, making it look easier because my honeymoon phase was long gone.

If you are reading this as an adult onset Type 1 and are thinking that I’m crazy, you should know that I now realize that I am. These assumptions I had based on limited experience were crap. Since joining the DOC, I’ve also gotten newer information and support to help with my diabetes. I’ve learned that it isn’t easy for anybody, even people that seem to have the perfect CGM graph or perfect A1C or whatever have days they struggle with the disease. If someone were to start following my blog or my Twitter now, they would think I was one of these “perfect” people because my high alert is now set at 140, not 240 and my A1C was 5.5 but I’m not perfect. I struggle every single day with diabetes. Sure, my blood sugars look amazing, but it takes a TON of work to get it there. Even though I have had diabetes for over 20 years, I’ve gotten a new push to be better (trying to conceive then actually conceiving and growing a baby). If you have had diabetes for a while and you are exhausted, frustrated or burnout from it like I was, don’t be too hard on yourself. It’s a very frustrating disease at times and having it for a long time doesn’t make it any easier.

Likewise, some newly diagnosed diabetics don’t have it easy either. I had the “benefit” of getting the disease when I was younger so the majority of my life I have had it. I say this is a benefit because it wasn’t too hard to “accept” the diagnosis because I was so young, I didn’t really understand what was going on. To be diagnosed later in life must be really tough because you know what your life was like before having to carb count all the time. I’m sure there are a lot of newly diagnosed diabetics that are having a really tough time and I hope they find the Diabetes Online Community (or other support groups like DiabetesSisters!) like I have to help them get through the tough times.

We (diabetics) are all fighting this disease on a daily basis and some people do make it look really easy, but it doesn’t mean that it is. While I was frustrated at first with all the “newly” diagnosed people I met in real life and online who made it look easy, I realize how silly I was to be frustrated by them because they are fighting the same battle I am and sure some days can be easy, others can be just as difficult (i.e when you eat the same thing for breakfast every morning but some days your blood sugar sky rockets and other days it doesn’t. Why diabetes? Why?!).

4 thoughts on “Frustrations with Adult Onset Type 1s

  1. I was diagnosed at age 24 and definitely am glad not to have had Type 1 through my childhood and teen years. I don’t know that mine is easier to control than T1’s diagnosed as children, but I do know that at age 62, I have had diabetes for 38 years. When you reach my age, you will have had it for 53 years. Some people seem to think that all adults diagnosed with Type 1 have a slow onset. LADA is really a subset of Type 1 and only describes some adults. I always wonder about the psychological differences of being diagnosed as a child/teen versus an adult.

    • You bring up a great point, Laddie! I initially was thinking of people who I met that were recently diagnosed versus adult onset because yes, like you said adult onsetters could have it for a while! The more people I meet, the less I think there is really all that much different between us because no matter what, diabetes is a pain in the butt! 😛

  2. Love this post. I’m the same way… I was diagnosed at 28, but that was 23 years ago. I’m starting to feel bummed thinking about how soon, half my life will have been lived with diabetes. I’m even more bummed knowing you’ve already had to do that.

  3. My sister got Type 1 when she was 13, I got it when I was 8, and my mother always said she (my sister) had a much longer honeymoon period. My old boss’s husband got Type 1 in his mid-30s and was not even taking shots for a long time, or taking like 3 units a day, whereas I was diagnosed after going into DKA coma and went right to shots. I do wonder if there is some truth to “the later you get it, the longer the honeymoon.” I guess, though, that I am glad I did not get Type 1 as an adult, because I think it’d have been a big adjustment to make. As a kid, you just roll with it. However, I wish my eyes/kidneys/blood vessels had gotten it when I was an adult, so they wouldn’t already have had it 31 years . . .

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