About a year and a half ago I attended a Children with Diabetes (CWD) conference in Marco Island, Florida, where there was a session held by someone from JDRF regarding the potential for a cure and what a cure might actually look like.
Going into the session I didn’t expect much. I’ve heard the research, and being cured has never been at the forefront of my mind. I feel that it would be much too exhausting to live my life with a “When am I going to be cured!” mentality. I prefer to live life with the understanding that everything happens for a reason and when the time is right, a cure will come.
I could tell from the start of the session that it wasn’t going to be one I particularly enjoyed. (My heart is actually pounding a little bit as I recall the session in detail.) I can’t remember her name, but the woman running the session was extremely nice. She was bubbly and excited, but from the beginning of the session she started talking about how, after her brother was diagnosed with Type 1, she started to think of herself as a Type 1 1/2, or something like that.
Initially I thought it was just a little joke that she would move on from, but she insisted on referring to herself in that way for almost the entire session, and I became extremely agitated. Families are vital to individuals living with diabetes, and our siblings are some of the people who understand it more than anyone else. However, what she didn’t realize was that she made this disease into something about her.
Perhaps others saw her self-proclaimed diagnosis of Type 1 1/2 diabetes as harmless and lighthearted; considerate, even, given the unfortunate circumstances. However, I was just angry. Though I rarely complain about it, I would never, ever wish diabetes on anyone. Having a sibling or child with diabetes doesn’t make you a “partial diabetic” by default. I was offended by the fact that she was so excited about calling herself a “diabetic” because it really, truly trivialized the disease.
But I digress. The session itself, as I stated before, was about research in terms of a cure. After the woman finished her bit about having diabetes, blah blah blah, she went into the research portion. The obvious thought would be that whatever she said changed my mood and got me excited because of a potential cure. Right?
Wrong! Her explanation of all the things that are in the works only exacerbated my irritation with her. I don’t think she realized the real effect of her words. Essentially she went over all the technologies, but followed it up by saying that there were huge risks because there’s no way of knowing if the cures would work on everyone or if they would only work temporarily as has been the case in many people that have undergone pancreas transplants. She emphasized the fact that the longer you’ve had diabetes, the more likely it is that cures that work for people who are newly diagnosed will not work for you. I don’t know why, but she kept talking about the potential for a rejection of the different types of cures and the likelihood that you’ll be rediagnosed with diabetes.
As I walked out of the session, I couldn’t shake off the psychological effect it all had on me. First of all, diabetes has become a serious part of my life. For the past nine years, not a single day has gone by where I haven’t pricked my fingers, manually given myself insulin whether via syringe or pump, and calculated the carbohydrates I consume. It’s a part of who I am. To all of a sudden be cured would be a massive adjustment.
Not only that, but the idea of being cured but living with constant fear that I could get it back at any time was really intense for me. If I ever have the opportunity to be cured, I’d only do it if the chances of staying cured were 90% or above. I might sound like a snob, especially to the scientists who work on this day in and day out, but the truth is that I’m not ready to be cured. I’m not ready unless I know that it will really work.
I would honestly rather continue living my life with diabetes because at least it would be a constant. I can’t imagine how I would feel if suddenly one day it all came back. I feel like I’d never actually be relaxed because I’d always be wondering if it was going to back.
At one point I used to think I didn’t want to be cured because of my CWD friends and the deep connection we’ve formed. I know that it may sound foolish to not want to be cured of something that’s clearly bad because of a few friends, but if you’ve read my posts or are a part of CWD, you know what I’m talking abut.
At this point I can’t say I would use that as a reason. We’ve already been through so much together that we’ll always have a connection because of the shared experience.
I used to think that being cured of diabetes would mean we’d all lose touch and live our diabetes-free lives, but I know that there’s no way that would happen. Because I realized that 99% of our conversations have nothing to do with diabetes. We talk about it every once in a while, but it’s no longer the focal point of our relationships. When we’re down and need a moment, or when things are going ridiculously well, we’ll talk about it! It’s not like we avoid the subject; it’s just not the most important thing anymore.
This is one of those posts where I could just go on and on, but I’ll stop here. What are your thoughts on a cure? Are there any conditions where you would pass on being cured, or would you take the option of a cure no matter what the odds are? I really would love to hear what you all have to say!