Stop saying "Cure" at Diagnosis
Wednesday, December 5, 2012 at 9:35AM 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.
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.
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.
DiabetesDaily, Freelance, Guest Post, type I in Daddy's Blog, Freelance, Guest Posts
Reader Comments (11)
I messed up and mistakenly deleted this post (Stop saying "Cure" at Diagnosis) on January 16, 2013. I was able to recover the original link so that Google and other links still leads to this page, the text was also recovered (in its entirety) and reposted.
I was however unable to get your comments to relink to the page, even though I still have them on a part of Arden's Day that you can't see. I've reposted them below without the contact information that you originally provided. I'm so sorry for the mess, first time in six years I've done something like this. Hope to never do it again.
Thank you for understanding.
Scott
Many of you know that Arden's Endo is at CHOP in Philadelphia. I want to be clear that Arden was not diagnosed at CHOP (we were on vacation) and the "cure" promise that was made to us did not happen there. CHOP dispenses honest, real world information about diabetes and is a wonderful resource for children living with type I.
orig posted Dec 5, 2012
Thank you so much for saying this, just last week my 10 yr old daughter CWD said she wouldn't have to do this forever because her doctor had said, 18 mths ago at dx, that there would be a cure in her lifetime. I tried not to be doom and gloom but explained to her that while the doctor meant well, it is alot more complicated and could take a long time. Also wanted to thank you for your G4 review, we ordered this week and hope to have it by the new year. It's our first time with a CGM and I can't wait.
orig posted Dec 5, 2012
Thank you Jennifer for putting another face to the story!
I hope you and your family are well and I can't wait to hear about how you like the DexCom G4.
Best,
Scott
orig posted Dec 5, 2012
I had a much different experience when my son was diagnosed (in Ontario, Canada). The doctor and CDE told us in the emergency room that he had Type 1 and would have take insulin for the rest of his life. At a later appointment with a different doctor, we were told closest thing to a cure would be an artificial pancreas. I was glad for their honesty, and for not trying to set our hopes too high.
orig posted Dec 5, 2012
Thanks to Jenifer and David both for their work for diabetes. I would say the technology exists to treat diabetes in a way that it does not have to have a negative impact on any goal or dream you may have. Be diligent with your diabetes care and there are no limits to what you can achieve.
orig posted Dec 12, 2012
when I was diagnosed at age 9 I was also told a cure was close. The doctor told me by there would be a cure by the time I was 18. I actually think this was very helpful. As a young kid I clung to the idea that there was an end in site. I remember on my 14th birthday thinking this is halfway over. By the time I turned 18 and now at 28 I am able to understand just how difficult it is to find a cure and am much better able to handle the idea that a cure is a ways off. Overall I think my doctor telling me a cure was around the corner at diagnosis was very helpful in young me dealing with the diagnosis.
On another note I also think perhaps we need to look at the idea of what does a cure really mean. I just finished reading "Breakthrough" about the discovery of insulin. In that book patients were also told a cure is just around the corner. For them cure meant insulin; it meant not dying of diabetes but being able to live a semi normal life. Flashforward to when I was diagnosed when NPH and regular were the best insulin available. I ate a rigid diet at exact times each day, had to get up at specific times each day to take my insulin. Now I'm on an insulin pump and able to be spontaneous in my life. I can eat what I want just like any other person. I have a CGM that allows me to have an idea of my bloodsugars and a small meter that barely takes any blood. Treatment has come a long way from when I was diagnosed almost 20 years ago and I imagine treatment 20 years from now will be well advanced from what it is now.
A cure is never going to be the magic pill I imagined as a nine year old. To me a cure now means an artificial pancreas. I'll still be attached to something but can you imagine the freedom of a device that regulates your bloodsugars for you.
orig posted Dec 31, 2012
Hello Jennifer, thanks so much for adding your thoughts and experiences to the conversation! You've made many valid and thoughtful points in your comment and I'm genuinely happy for you that your path took you in the direction that it did.
There is a wonder of good in healthy hope. We talk about it here with our daughter almost all of the time. I just see a world of difference in being told that a certain end is around the corner and the truth. The truth, just as you pointed out, that there are countless people working very hard to find improvements, cure possibilities and other technologies that will improve life.
Thank you again for commenting, I hope you do so often in the future!
Have a Happy New Year!
Scott
orig posted Dec 31, 2012
Scott,
Thank you for these writings! I couldn't agree more with your "Stop saying Cure!". I was diagnosed 32 yrs ago and while getting regulated at Joslin in Boston, was reassured repeatedly that a cure was 'not long'. At 18, and just moving out of my mother's house, all of it was up to me. I literally had no idea what this disease was, what it meant etc. My 1st day home my mother's advice, as she handed me a giant Easter basket was "Just don't tell the Dr!". I don't think anyone created that environment on purpose, but I spent the next several years, essentially ignoring my diabetes. I was trained to check my glucose by peeing in a test tube and adding a color-changing pill. One shot a day of NPH and Regular, all animal based, was as good as it was. It was certainly all very hokey at the time. And all "just a little while longer" till I'd be "good as new". What they DIDN'T explain was - There are some great advances coming up in mgmt - watch for blood test strips, watch for Glucometers - nothing like that. The 1st round of insulin pumps were out - and people were dying from them. But I held fast to that knowlege that the cure was just around the corner. Of course there WAS one Dr who informed my parents that if I was lucky I'd live to be 60 - and with those methods back then that was probably about right. Nothing like getting an expiration sticker!
Eventually I figured out the truth and it was more years of bitterness and anger at this stupid all-consuming disease, before I finally decided the whole 'cure' thing was BS and it was ALL up to me. These days I'm on an Omnipod insulin pump (which I LOVE!) and just started the G4 upgrade from the 7+ (so far so good except the adhesive is ITCHY!!). When before I would go weeks and months, without checking my sugars, now I can't stand to go the 2 hr startup time without that information. It was never that I didn't WANT to take care of it - it was that I never wanted to give up that HOPE that they promised me. If there was a CHANGE to get better - than why embrace being deathly ill ??
Well, I've been diabetic much longer than not at this point - I don't know what I'd do if I could "just eat" - I think it'd be weird. But I do still resent those people telling a scared teenager, that this was all just temporary. That was just MEAN. Maybe if I knew then that it was forever, I'd have cared more and had less laser surgery, less complications and be healthier now ?
Who knows - but I agree - stop lying, the disease is bad enough.
orig posted Jan 3, 2013
Patty, I love that your comment is so honest and personal. Thank you for sharing your experiences in a way that lets us all understand your journey. Hope that you are well!
Best,
Scott
orig posted Jan 3, 2013
Awesome post Scott man!!!! We had an eye doctor my wife knew said there would be a cure in five years. That was four years ago. That created FALSE HOPE! Blog post pending. If I see that person it will take all my strenght not to rip them a new one. After doung research for the BCG articles for Everydayhealth I came away with the conclution the its NOT close. Thanks again buddy. I may request a meeting with our endo clinic have the read this post.