There’s an online petition going around advocating for changing the names of type 1 and type 2 to something that is less generic. In the past, I think I might have supported this initiative. I can appreciate the argument that has been outlined by its creators, a couple of moms of kids with type 1, and there could be potential benefits to a name change. The problem is that it would come at a steep cost to the diabetes community, and I’m not inclined to think it would effectively resolve the problems the creators think it will.
When the petition popped up on my radar, my immediate gut reaction was uneasiness. Once I had collected my thoughts about this, I shared my opinion more privately with some people in the DOC, but since this petition seems to have some traction, I feel compelled to offer my thoughts on the matter for consideration more publicly. Not that too many folks visit my blog much since I don’t post often, but this is still my place to put stuff out there.
First, let’s review the nomenclature history. For most of the time that diabetes has been recognized as a disease (think Ancient Greece or thereabouts), it’s been known simply as diabetes mellitus. When it manifested in children, it progressed much more quickly than it did in adults, but it was thought to be one condition, and calling it childhood or juvenile onset and maturity or adult onset was considered adequate. In 1980, the World Health Organization changed the names to insulin dependent diabetes mellitus (IDDM) and non-insulin dependent mellitus (NIDDM).
The IDDM and NIDDM nomenclature obviously presented a lot of problems because some people with NIDDM took insulin. In 1997, they acknowledged the problem with the 1980 name change, and in the interest of not attaching new descriptive names that would ultimately be misnomers like the previous names, they went with something that seemed generic and symbolic rather than descriptive: type 1 and type 2. It’s not perfect, but it eliminated some of the problems of the previous nomenclature… sort of.
It would have been just lovely if they had understood diabetes better when they changed the names from juvenile and adult diabetes to IDDM and NIDDM back in 1980, and assigned names that more accurately captured the pathogenesis, but they didn’t do that because they didn’t really understand the differences, or that there even was a fundamental difference. They know a heck of a lot more now, but the bottom line is that they still have a lot of work to do to understand the pathogenesis of either.
The problem with not really understanding the diseases is that a name you assign today might be proven to be a misnomer with future research findings. I’ve heard some people suggest that type 1 be called auto-immune diabetes, or something to that effect, and I’d made the suggestion myself back when I thought the name change was a good idea. However, did you know there’s research evidence that there is an auto-immune reaction involved in the development of type 2 diabetes? My point is that coming up with descriptive names, as opposed to the current generic, symbolic names is highly problematic when you have diseases that need to be further researched, which have some differences, but also have a lot of similarities.
They’ve made all these name changes, which might have seemed very clear and worth the effort at the time they were made, much like some people think a name change is worth the effort now, and what has that done? I’ve had the same disease since 1978, and it’s had three names over the years. Never mind that it was changed to type 1 diabetes 16 years ago, it still has three names. Most people don’t know the difference, and don’t really give a shit unless it directly affects them. It’s not just laypeople either. Having worked in healthcare settings, I’ve seen and heard doctors and nurses who don’t specialize in diabetes care use the old names. Patients with the disease still use the old names, probably because their healthcare provider used the wrong name, or if they’ve had it for many years, they’re just using the terminology that was current when they were diagnosed. The name issue at this moment, without adding more names to the mix, is still a ginormous clusterfuck.
With all due respect, if anyone thinks a name change is going to mean they’d eventually catch a break and not have to explain, they haven’t really thought this through, or they haven’t had diabetes long enough to appreciate how this history of name changing has played out and affects people over time. Think of the 92 years that insulin has been around as a treatment, but there are plenty of folks out there who think it’s a cure. That very basic level of knowledge is still misunderstood. Don’t overestimate public health literacy because no one has figured out how to conquer that mountain on any health-related issue. I will be explaining what kind of diabetes I have for the rest of my days. You will be explaining it for the rest of your days. I’d bet money that all the children with diabetes will be explaining it for the rest of their days too.
So if we don’t change the names, what can we do?
I think the answer that will lead to effective solutions is a change in mindset, and increased tolerance for the reality that people without diabetes, or people whose experience with it and understanding of it has been different than yours, shouldn’t be held to the same standards as we hold for ourselves regarding knowledge. Basically, cut people some slack, and be willing to explain.
Yes, it’s frustrating when people don’t understand and make comments based on limited knowledge and experience. I get that. It tests my patience some days just like it tests yours. I try to be the informed ambassador for diabetes when I have the opportunity, but sometimes I fuck up because I’m tired of explaining. I complain to others, I post an occasional rant, I make snarky jokes to cope with my frustration. However, I know in my heart that the anger that underlies the frustration isn’t that other people do not have the knowledge or experience. The anger is because defective genes, some unknown environmental trigger, and crappy luck caused me to get diabetes. I’m angry at my body, my beta cells, my pancreas, my genes, the universe that smote me with this bullshit disease. I’m angry because I have to be a walking encyclopedia about diabetes to live, and they don’t have that same burden. I’m not angry at them for not knowing; I’m angry because I have to know. It’s a subtle, but very important differentiation.
While I understand the motivation behind this campaign to change the names, instead of putting effort into it, I’d like to suggest that we put resources into projects and initiatives that will have a more discernible, immediate impact, efforts that we can all join to support ourselves and each other, rather than efforts that will divide the community. There are far too many unmet needs in the worldwide diabetes community to get bogged down in nomenclature, so instead of separating, let’s unite and rise up. I understand the strong emotions that this issue has elicited for some, and I recognize that not all minds can be changed, but I hope some people will reconsider and reinvest their energies. We are a big community that can accomplish a lot, so rather than divide into separate factions, let’s support each other’s goals, find our common ground, and identify and accomplish goals as the diabetes community.
Here are some additional links about the name change issue that I highly recommend:
Association by Bob at T Minus Two
I have a disease – it’s called diabetes by Courtney at Ride to Remedy
The Kerfuffle Over New Names for Type 1 and Type 2 Diabetes by Amy at DiabetesMine
Let’s Come Out of the Diabetes Cave Together by Manny at the Diabetes Hands Foundation Blog