I’ve struggled with understanding my diagnosis for years. In the past I have wished for a specific label, hoping that it would guide my treatment. If you have read my postings you will see that I looked into whether I have MODY. This was after spending a couple years asking for the proper tests to see if I actually had type 1 diabetes, those tests came back negative. So I now have come to an acceptance that I have type 2 diabetes which essentially means that I have “diabetes of unknown cause.”
The trouble is that this diagnosis is not sufficient to assure that I get proper treatment for my diabetes. It was six years ago that I started on my (own initiative) managing my diabetes with insulin. This was only after exhausting my options and concluding that as someone with type 2 I would be denied insulin until I basically ended up in the hospital. And here it is six years later and I have spent basically the entire time with a treatment regime that is indistinguishable from a type 1 treatment plan. And for at least the last two years my endo has repeatedly called my (and coded me) as a type 1. After all these years I have come to accept myself as a type 2, I have resisted accepting a change in diagnosis, it seems to not be supported by specific evidence and I feel like I am abandoning all my brethren who have type 2.
You are the last, last person that anyone could describe as “abandoning”! You help and provide information and give support to everyone here, regardless of their “label”! And your journey to define your diabetes and find the best treatment for yours helps so many others whose condition doesn’t fit an easy definition and inspires everyone with your dedication to your health!
It’s so important to have you here. Should we just call yours “Diabetes Type Brian”?
Sorry that you are stressed about this. Thank you for expressing your distress. Thank you for all that you do for all of us!
. . . and as you well know, you are far from alone. While not comparing our journeys, I too reached the conclusion that I was going to have to define my own treatment plan (including insulin) before it was too late. And we have plenty of company. Just because they don’t all speak up, don’t ever think they’re not out there in substantial numbers.
I think you said it best in another post, but I’ll repeat it.
Labels aren’t as important as getting the right treatment. Because a label is not what you are–it is an attempt to explain what you are. Quite frankly, if someone could label me, I would be disappointed. In me.
The label is only as good as the labelling system. So we have phrases like jumbo shrimp, Senate Ethics Committee and military intelligence. As long as you’re squeaky and your doc gets you what you need–you’ll be fine.
That “tribe” thing is hard to escape despite all the movement in the direction of regarding D as our tribe, whichever “type” we have. I totally get that argument, but I struggle with it, particularly when the media use the D word without modification when they’re talking about T2, as if D & T2 were synonymous. A LOT of T1s get ripped about that, as you can tell in the comment threads to those kinds of articles. For me it began pretty much from the day I was dx’d 30+ years ago because ALL the little pamphlets and BG notebooks and whatnot the doctor’s office sent me home with were oriented toward T2, with pix of smiling elderly people doing healthy things. Cuz you’re supposed to get the “mature” kind in late middle-age right? and there isn’t any other kind! For a guy in his twenties that made me fairly militant about it. I joked with my wife about having “old fart disease” but it really pissed me off in the irrational way that kind of thing does. Of course now I am one of those old farts, so my perspective’s a little more evolved. I don’t think it was entirely about the “lifestyle disease” stigma–I really don’t remember that being a thing back then; I think it’s only become prominent as Diabetes Panic! and Obesity Panic! arrived on the scene back in the 90s and merged together. It was just about wanting people to understand the disease I actually had.
The stigma aspect is layered onto it now of course. For T1s, or at least for this T1, it’s always this awkward situation when it comes up of trying to explain two somewhat contradictory things at the same time–that a) your assumptions about D and what causes it don’t actually apply to me, and b) those assumptions also aren’t valid as they pertain to the people who, supposedly, they do apply to. It’s hard not to get wrong-footed somewhere in having that conversation. Mostly people just tune out before you can get it all out there, attention spans being what they are these days. All that notwithstanding, though…
I feel like if I accept a CGM based on her diagnosis of me as type 1 I will have gone through a door and will affect how I identify myself, who I think I am and what tribe I belong to.
@Brian_BSC, we PWDs really are all different, as you know. I’m a typical LADA Type 1 and have nothing tech at all, no pump, no CGM, just my Levemir and Apidra pens on MDI and a backup vial of Regular. I suppose there are a few other folks like me… Natalie calls herself a Type Weird; I call myself one of those also.
I have never understood the type 1 and type 2 classification, yes I understand how it eveoved.
But I see the disvision between those who don’t produce enough insulin or none at all and those who still produce enough insulin, but don’t use it well.
It does not really matter how one lost the ability to produce. insulin.
the treatment is so different between the two. One could actually progress from one to another. And the treatment would follow.
Tempted to embed a clip from the end of the classic cult film “Freaks” here (“One of US! One of US!”) but I fear it would be in bad taste. I think I was trying to say I totally get where you’re coming from emotionally (if from the other side of the door) but healthwise you do what you gotta do.
I remember way back then when you put yourself on insulin and suddenly your diabetes became manageable, and what a relief that was.
I certainly think you should accept your Drs’ label simply so you can get the treatment you need under your US insurance system. Not Type 1. Type “I” Treat my diabetes optimally, “I” do what I need to do to stay healthy.
I use insulin but my current Dr considers me Type 2. My Ex-endo considered me gestational. I can see all of this causing problems down the line when I eventually (if ever) go back to Australia and need to fit in with the health care system there. Somehow I will want to get documentation supporting type 1 probably for the same reasons you mention above - though possibly I will just be denied any sort of private insurance…
