I was one of the many bloggers asked to post a guest blog at the DSMA (Diabetes Social Media Advocacy) website during the month of November. You can read some of the great discussion that followed there after my post.
Being a Type I diabetic and/or having a Type I child can be extremely demanding, both mentally and physically. I never really thought about this before joining up to DOC’s (diabetic online communities). I didn’t realize that others were in the same boat - I basically dealt with my diabetes on my own, and it’s been a roller coaster ride. Yes, I do have an endocrinologist that I see every 6 months, but all he is concerned about is my A1C reading. Sometimes we’ll discuss the ongoing research that has come across my desktop, but basically, he feels I do a good job managing my diabetes, and leaves me to it. That’s where the DOC has played an important role in my life, as it has for many other diabetics around our big blue marble. I can talk about the day-to-day issues, the ones we all have to live with.
The ability to adapt to this chronic disease is really a testament to the human spirit and our ability to adapt to difficult situations. However, as we adapt I think we can lose some of our perspective. I have read in blogs and/or forums where diabetics are struggling with issues and looking for help. The responses they get from other diabetics are sometimes so self-righteous and insensitive that they are downright hurtful, and honestly sometimes have made me want to no longer be involved in the DOC. Because we are all so different (e.g. age, metabolism, activity level, and other medical issues), the level of difficulty in maintaining ones diabetes varies from individual to individual. When a parent writes that they are struggling with their child’s diabetes, do we step back and consider that they may be a stressed out single parent who work long hours to support their family? Or perhaps that active child may have other health issues impacting their overall diabetes care? If you have near perfect control but do not exercise and/or maintain an active lifestyle, you may think we have it all figured out! The question that goes through my head at that point …
“Are you really doing what is best for your overall health, and how can I or someone else judge you? “
One specific subject that really bothers me, is when someone blogs about pump related problems; they are either immediately dismissed as to not knowing what they are doing - “go read the manual you dummy, I don’t have this problem!” or “it’s a one in a million chance” and “it can’t happen to me” type of response. That is BS as far as I’m concerned – especially with some of the emails I’ve received in confidence ever since I blogged and opened up forum discussions about the pump and Stephen Krueger at Diabetes1.org and a few at Tudiabetes. Stephen's insulin pump primed the whole contents of his insulin cartridge into his body while he was sleeping, resulting in his untimely death.
We have to realize that insulin pumps do malfunction, perhaps more often then we are willing to admit. Earlier in the Springtime the FDA called a meeting to discuss the numerous reported problems with insulin pumps – and since then – the ball has started to roll (more information can found at this link. I understand the desire to not want to confront this issue, but it is ultimately better for all of us to take each story seriously, to encourage those that may have had a bad experience to come forward, and to hold the manufacturer’s accountable.
Yes, we all do dumb things sometimes, and unfortunately diabetes is not very forgiving when this happens. Let’s have some empathy towards our fellow humans who are impacted by this disease, and always show our civility when we are in forums or responding to a heart-felt blogger. We are bigger than this disease, and lets help each other beat it!