Blame is a complicated concept. There are a lot of sides to this. I’ll start with other perceptions first, particularly in the healthcare field. I have had T1 for 39 years now and I’ve had great doctors and nurses and some who were just awful.  Last year, I broke my wrist and while in the emergency room having a splint put on, the ER nurse asked if I had found an ice cream that I could eat that tasted really good.  Sigh.  Not this again.  I told her I had type 1 diabetes and that I could have any kind of ice cream, I would just figure the carbs in. She asked me if I was sure. Sigh again. I attempted to explain carb counting and she was astonished that you could “just know” how many carbs were in a half cup of pasta! I could tell she was judging me.

These situations are tough. She was a healthcare professional, but clearly had no clue at all about type 1 diabetes and how it is managed. What could she have said instead? I’m not sure because she did not have correct information to begin with, but thought she did. She was under the all-too-common-even-amongst-healthcare-workers blatantly incorrect idea that type 1 and type 2 are pretty much the same thing. More education needs to be done here clearly before I’d hear words that would empower me in this setting.

I had an endocrinologist years ago who took over for my beloved doctor who up and moved to Montana! How could he do that to me??? The young doctor who had taken over his practice loved to refer to me as “uncontrolled.” My hackles are up at that word even as I type it. “Brittle” is probably the only other word that produces that level of irritation in me. I would counter her with, “How can I be uncontrolled if I’m checking my blood sugar over 12 times per day and adjusting as necessary?” She told me some people were just “lucky” with good numbers. Uh-huh. Then why bother if it’s all luck anyway? I was always in tears when I would go to see this doctor. In fact, I’m sure my blood sugar readings in that office were affected by my dread at every visit. I eventually stopped going to her and when I requested my records, she actually called me to ask me why I was leaving.  I told her that she treated patients, or at least me, as numbers on a graph only. I had had T1 longer than she had been alive at that point and although I’m not a healthcare professional by any means, I do know what it is like to live with type 1 diabetes.  Don’t treat me as if I don’t know anything about this disease. Try being a partner to a patient. Don’t tell me my blood test results were “fine.” I want the actual numbers. I know what they mean.

I’m lucky here though as a recommendation and introduction from my daughter’s endocrinologist to my current wonderful endocrinologist was a lifeline I was desperate for. Now I have a doctor who does listen and works with me and does not pass judgment on results. We talk about ways to get the results that I want. As I mentioned in a previous blog, I like her so much, I still see her in Los Angeles every 3 months even though I live in Massachusetts now.

Now onto my own perceptions.  I can throw down blame with the best of them.  An unexpected high number appearing on my CGM can turn a good mood sour pretty damn quick and if I have trouble bringing it down or truly have no idea where it possibly could have come from, I will start questioning if I have any clue at all in how to manage diabetes. It angers me and it depresses me and I will more often than not respond with a “rage bolus” that will have me crashing soon after.  I share my CGM readings with my boyfriend – he has an app on his phone, as I do, where he can see my blood sugars in real time.  With my traveling to Los Angeles as often as I do, I know this is a real comfort to him to know what’s going on.  I’m a worrier by nature, so I worry that is a burden, but he could not be more supportive.

I do also wonder when I get a higher than I’d like A1C reading, which I did last visit to be honest, what am I doing wrong? Funny, I never tell myself all the things I am doing right.  It’s interesting too because where my daughter is concerned, I tell people not to use phrases like “good” or “bad” blood sugar numbers.  It’s information so she can decide what action, if any, she needs to take such as give more insulin or eat something.  Too bad I can’t do that for myself!

I also read a lot of running with type 1 blogs and articles and I feel a lot of times that they all have this thing down and effortlessly know exactly how to adjust food and insulin and hydration and I struggle with those combinations every single time I don my running shoes.

As for what I’d tell myself, it’s back to the information bit. It’s all information. Don’t let any number or diagnosis define you, use it to decide how to proceed, what to change, what to keep the same.  Easier said than done! I really should tell myself what I tell my daughter. She’s way smarter than I am anyway.