type I diabetes - Arden's Day

I want to thank the Co-founder and President of Diabetes Daily David Edelmann for inviting me to contribute periodically to his wonderful site. Moreover, I want to thank him for understanding when I expressed my desire to repost on Arden's Day, in it's entirety, my work after it had run on his site. This is not the norm and generous of David to agree to. Reposting is not an attempt to "double-dip", it is being done so that all of my diabetes writing can be housed on Arden's Day for reasons of backup, cataloging and posterity. Please know that I was not paid for writing on Diabetes Daily nor did I compensate them. With that said, here is my first piece for Diabetes Daily as it ran on November 16, 2012.

Using the Word "Cure" at Diagnosis... Must Stop!

Before we left the hospital after Arden’s diagnosis the doctor told us that she expected type I to be cured in lab mice within a few years. That breakthrough, she said, would lead researchers to find a way to cure people with type 1 diabetes.

Every person that I’ve ever met who has type I has a similar story about doctors giving them sincere hope for a cure, and the message they receive is often followed by a time frame: “They’ll cure it in five years” or “Just hang on, a cure is close” or “Ten years, no more.” Why would medical people make you such a promise? Why would they tell us that our daughter had a life-long, incurable struggle, spend days teaching us how to keep her alive, constantly remind us that we are literally learning how to keep her alive, and then drop in the idea that it’s not going to be too long until a cure is found. What would bring a person to say something so cruel? I’ve thought about it a lot and honestly, I think they say it out of compassion. It’s a very short-sighted compassion, but never-the-less….

I personally can’t imagine having a job that required me to tell people each day that something bad, something they don’t deserve is happening to them. I wonder what we looked like when we heard the words, how much anguish did our faces reflect? How could a compassionate person not want to, even in some small way, assuage that anguish.

A few months after Arden was diagnosed I woke up one morning, sat at my computer, and read the world news. I saw the report that brought my spirits to a new high that morning, a level that I had not imagined would ever be mine to enjoy again; someone cured type I diabetes in mice. I cried. Arden was next. This was almost over. Of course it wasn’t, but armed with the words of Arden’s diagnosing doctor, I read this article with no reason not to think a human cure wasn’t mere months away. I mean, it was happening just like she said it would. However, when I began to dig into the research, I found that a few researchers had cured type I diabetes in mice, and that this news was neither new nor a concrete promise that humans were next. It certainly didn’t mean that a cure was imminent.

Since that time I’ve met people who were told “five years”…and that was twenty years ago. In fact, so much time has passed that I am now one of those people. I believe that we should all live with the hope that a cure will be found, but plan and act as if it won’t be.

I want all of the doctors to know that whatever the reason is that you stand in front of your patients as they struggle to hold themselves up, and promise them something that you have no control or honest idea of; why ever you do that, please stop. When the day comes that they realize that your words were empty, they will feel immeasurably worse then they did and you will have done them more harm then good. You also steal from them the time that they clung to that hope, time that could have been used to really take control of their lives. Diabetes felt like something that we just had to manage until the cure because of what we were told. I would have much preferred to take it with the level of seriousness that it deserves and frankly requires from day one.

A better way to give your patients hope would be to honestly give them hope. Technologies, insulins, community, these are all bright spots that lift Arden’s life. Why didn’t you tell us about them? Why did you release us into a world that was completely foreign and frightening with only a fairy-tale to protect us? You don’t give people enough credit for their strength, you needlessly error on the side of caution when you give us details. Didn’t you see what happened when the Greatest American Hero lost that instruction book? We need all of the details, yes they will be overwhelming, but I promise you not nearly as soul crushing as the day I realized that you were lying to me about a cure. Maybe you didn’t think you were lying, but how in the world could you take that chance, and make that promise? It’s criminal.

I would have liked to have been told that researchers have been trying for decades to cure type I, and their efforts continue, but that I should not hang my hopes on a cure. It would have been nice to receive coping tools, and a complete explanation of the moving parts. An honest and heartfelt message of reassurance would have gone a much longer way then the temporary patch that you put on my grief. It did not hold, it held me back and it gave me one more chance to be sadder then I ever imagined that a person could be.

Please stop saying the word cure just to make people feel better.