Sunday, August 05, 2007


Long before I was diagnosed with diabetes, when my only diagnoses were about the function of my brain, I used to say that people should try curing fatal things like diabetes, and leave us alone.
But now I have a diagnosis of diabetes, and I can't stand the cure rhetoric. The I've had xxxx shots and xxxxx finger pricks and xxx site changes. This does not represent me. Yes, I've had at least a thousand shots and I'll hand thousands, maybe tens of thousands more. Yes my fingers sting, yes my limbs bruise. NO this is not suffering. No, this is not what needs a cure.
We need change not because little fingers bleed, not because skin is punctured, not because we "deserve" to be normal, not because children should be children. Because guess what? You coach it right and kids are proud of blood, learning great skills from doing shots, learning about "normal". This is just disability.

We need change because diabetes is a death sentence, albeit one with two lawyers and appeals to supreme courts and a long delay from sentencing to death. We need change not for kids with diabetes but for kids who are diabetes orphans. We need social change for the teenager who's ashamed for guys to see her pump; we need a cure to deal with the teenager who's dead in bed.

To me, having to take shots is like having to eat; no big deal, though often an annoyance. Monitoring blood sugar is not particularly tragic, any more than coloring is. It is time consuming. Going hypo is a little more problematic because of getting weepy, and going hyper makes me lethargic. These are livable, nontragic annoyances, disabilities maybe.

I wear my other disabilities as a part of who I am and what has built me to where I am. Diabetes too is something I wear out and proud, as a disability.

But diabetes, unlike the rest of my disabilities, is also a disease to me, because unlike my other disabilities, which change the way in which I live my life, diabetes has the potential to end my life.

I would consider diabetes cured if shots gave me perfect blood sugar control and the complication rates were nil or close to it. I would consider diabetes cured if I could wear a pump plus CGMS that could control my blood sugar entirely, even if I had to calibrate it and do site change.

The tragedy of diabetes is in DKA, ESRD, heart attacks, dead in bed, car accidents from hypoglycemia, brain aneurysms.

Dealing with diabetes day to day is not a tragedy. Dealing with diabetic complications is.


Bernard said...


The rhetoric about a cure is interesting. Because in the end what is a cure?

Do I take a single pill, or shot and never have to take insulin again in my life. Now that would be a real cure.

My guess is closer to what you describe. That I replace insulin alone with a different form of insulin or with an injection of something (BCG?) every three months to knock out T-Cells and use some insulin to reduce the strain on my pancreas.

I'd take anything that would allow me more freedom. Freedom from constant calculations, constant fingersticks, constant fear of lows, and constant fear of complications. That's why I want a cure.

So I think you and I are saying much the same thing.

If you're interested, I'm riding to support Dr. Faustman's research into a cure for Type 1. Feel free to support me, the money goes directly to her research.

Scott said...

The irony is that the medical profession is so self-congratulatory about how much they have actually accomplished in diabetes treatment over the past 100 years, and yet if one examines the statistics, it becomes painfully evident that their idea of improved treatment falls far short of their own therapeutic objectives.

To me, intensive therapy is a lofty theory that fails abysmally in practice. The two most significant points of failure in these programs are (1) human behavior, and (2) severe hypoglycemia. Unfortunately, hypoglycemia is depicted as little more than an inconvenience, rather than an imperfection in treatment. The principle underlying the belief that more diabetes education will improve a person's ability and/or desire to practice intensive insulin therapy is grounded in the assumption that its reasonable to expect a person to perform these acts every day for the rest of his or her life. Yet hypoglycemia persists (and in many cases, gets worse) in spite of education.

Insurance companies and health care providers ponder their continued failure and, with few exceptions, conclude that "educating people with diabetes" to adhere to an intensive regimen of injections and diets will solve the problem. This philosophy has been the cornerstone of diabetes management and consequently the "blame" for secondary complications has shifted from the disease itself to the person who has it.

The fact is that that the regimen itself is unreasonable and that the co-morbidities of depression, eating disorders and family dysfunction are, after all, only human. The disparity between the findings of the DCCT and the continued escalation of secondary complications points to one undeniable truth—only a cure for diabetes can have any significant impact on the human toll the disease extacts.

Scott said...

BTW, I borrowed much of the content from my comment from an article written by Deb Butterfield, who is best known for her work "Showdown with Diabetes". Her conclusion has been validated repeatedly by those of us who try to live with intensive therapy. The reason I note all of this is because back in May, my posting "Making Light of Hypoglycemia" (which you commented on) generated a lot of comments, yet at the most recent ADA Scientific Sessions, there was hardly any discussion on the limitations of intensive therapy at at, and I think that speaks volumes on why we are unlikely to ever see an actual cure.

Major Bedhead said...

That was brilliant, Jonah. Very well-written and thought-provoking.

stacey said...

jonah, i didn't know you were on blogger. i like what the beginning of the entry says and your about me. can i link you?

Bad Decision Maker said...
This comment has been removed by the author.
Bad Decision Maker said...

Thank you thank you thank you for this post!! It was great. I was so excited to read it because I also am really bothered by the cure rhetoric, for a lot of the same reasons you've hit on the nose in this post. I've been surprised and disappointed to see it supported and repeated so much on a lot of other diabetes blogs that I otherwise like. I've been working on a post on it myself, but haven't gotten it out there yet (is it ok if I link to yours when I post mine?)

It sucks for a lot of reasons, including because it takes the focus from, like you say, debilitating or deadly complications to daily things that make us different. It makes difference a problem; it makes us a problem rather than the society that deals with difference in a messed up way. Why should I have to not be different? Why should I want to be normal, and what is normal anyways?

And in this, so much attention and energy and money gets put into trying to make people NOT have diabetes completely, when I'd rather see that go to making living with diabetes better. Make complications less likely, make it easier, and make complications less bad when they do happen.