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!!!
I have to say praise be to God. I am not alone. I am a forty two years type 1 diabetic. I was diagnosed at 12 …. I have been told by so many doctors “you will never survive”. they have told me they believe I have a death wish. I have cried, screamed and just plane just about gave up. I have so many horrible stories i could have wrote a book. However, I find hope in the fact i am not alone. I am a brittle diabetic. nothing I do today will work for me tomorrow. I can go for a 25 to 500 and back to 25 in less than 24 hours. I have been blamed by every doctor I have had in 28 years. I have fired more doctors than most people see in a life time. I have started telling them up front I will do everything you ask however we will decide together. I live with this illness not you. Then I say I am in charge and i need your help. If you decided you are no longer willing to help give me at least a months notice. Then when it goes bad they blame me will I decided with this last doctor…You are in charge doc but You can not blame me when it goes crazy. He still does. why does it always come down to me cheating?( so they think, like i am sitting at home eating nothing but chocolate cake and fries!!!) I am on a insulin pump and a CGM.. he finally believes me after a two week long stay in hospital. Life with brittle diabetes is crazy ….never boring, but people I am ready for a non roller coaster day.! I just want a a doctor who can not insult me or say its all my fault. Thank you for showing me the way. I am taking this article to my doctor for review
Hi Darlene -Thank you for sharing your story! You are not alone, and it’s not your fault. I’m glad the technology helps medical professionals believe us, but it’s sad that there’s no other way to prove it. Regardless, we’re finding each other and helping to support each other. I have my fingers crossed that your doctor will understand with more information and you’re helping to spread the word! Thanks so much! – Leann
I have lived this life for 20 years. There have been doctors who actually accused me of lying about my numbers on my diabetes logs. Why in the world would I do this? I’ve had a doctor who right in front of me told a student I was an example of a non-compliant patient as if I either couldn’t hear or wouldn’t understand. In twenty years I’ve only had one doctor who treated me with any real respect, and that was the resident who treated me when I was first diagnosed. The rest have all been either disinterested or hostile. Disinterested as if they believed I didn’t care how much I suffered so why should they, or hostile because they thought I was a lazy liar who didn’t mind feeling horrible every day of my life. Thanks for letting me know I’m not alone, although it makes me very sad to think anyone else has had to suffer the double whammy of this disease and anti-health non-care.