DiabetesMine.com came out with an article that I want to discuss. They address the term “Brittle Diabetes” and I wanted to be sure to share my comment with you. The reason is the treatment of people who have anything harder than an “easy” time of dealing with diabetes is a hot button with me. I wouldn’t have become a Diabetes Coach if I had had an easy time, with plenty of understanding people. It’s why I offer this, and I want to share a bit of my story with you. I understand there are plenty of people who treat diabetes like it’s not a hassle, and those aren’t the people I’m addressing. I’m talking to the rest of us who wonder how it is that their diabetes doesn’t behave nicely, and the comments and innuendos about not properly taking care of ourselves. Now, there are those who are looking for any label to use so that they actually don’t have to work so hard, and those aren’t the folks I’m talking to either.
I’m looking at you, the one who is constantly working hard and trying to do the right thing, yet constantly frustrated in your results.
First, go here and read the entire article. Trust me, you’ll love it. Now, for my comment and story:
Yes, Virginia, there really is such thing as “brittle” diabetes. Mike – THANK YOU for posting this and helping to raise awareness! I’m fine if you don’t want to call it “brittle”, but there needs to be more awareness of this rare phenotype so that patients (like myself) can get the help we need and are no longer blamed for being “non-compliant”. I just talked to Ginger Vieira about this on her podcast http://www.diabetesdaily.com/voices/2013/09/podcast-getting-support-for-emotional-struggles-with-diabetes/
I was diagnosed at 26 and from day one would go from 30 – 500. I charted my numbers to try and find patterns (back before cgms) and even thought I was an analyst at a Nuclear Power plant and had access to some of the smartest minds, no one could detect a pattern. I sat with my Doctor and the CDEs in the office for a week so that *they* could count my carbs, they decided bolus and correction doses: nothing they did was “right” either. The validation that came with the pronouncement “We believe you” felt incredible!
Over the next 13 years I moved and switched doctors. I tried Symlin, Byetta, Victoza, numerous pills and it wasn’t until I tried Metformin 11 years into all of this that we found the *biological* reason for my blood sugar swings. But prior, I was subjected to being called an idiot, uneducated, “you just don’t get it”, unwilling to comply with treatment protocols, and a host of other demeaning and degrading things by Doctors and CDEs. I had to find the resilience to keep trying and keep searching for answers. I didn’t receive acknowledgement for how hard I worked and because clinicians didn’t know how to help me, all shame and blame was placed upon my Diabetic shoulders. When I finally found a doctor who took the time to listen and try a $4 drug *and it worked beautifully*, I had the validation again that I had gone so long without.
Metformin stopped working for me eventually, but I had the fortitude to find another doctor who specializes in “brittle” diabetics who could verify what was going on, and it’s a condition with the communication of alpha cells to my liver. Had any doctor in 13 years even brought this up as a consideration? No, it was all the patient’s fault.
I became a Diabetes Coach to help people with the psycho-social aspects of managing diabetes due to the fact that my experience left me feeling shamed, invalidated and incompetent. NO ONE deserves to feel the way I was made to feel, regardless of the reasons they are struggling. Are there *plenty* of people who *don’t* have a biological reason for swings and just need information and a plan of action? Yes, of course – they are just lacking information the way I was. We have a gap in care: information does not equal action, and with coaching, all of that knowledge can be synthesized. I don’t come from a “I know more than you” mindset – there needs to be more personalized attention that fits each person’s life and challenges.
Regardless of the cause, there is something you can do, and you are not alone! But we need to raise awareness that even after detailed help, there still exists a phenotype that needs even more assistance. My specialist says that due to lack of awareness, there are not enough funds to research this phenomenon. He calls us “The 4400″ club, as the swings are just unbelievable and hard to comprehend. Thank you for posting this article!!!