Brittle.

The word brittle brings to mind something weak, easily broken, crumbling, cracking and fragile. For most people it stops there. Some folks may think of peanut brittle or brittle bones, but most will never understand or even contemplate the subject of "brittle" Type 1 Diabetes.

In the Type 1 community "brittle" is a controversial term that is not well received by many patients and clinicians. Certainly there are numerous individual reasons that the term is not preferred by some patients. What I have gleaned from a few fellow type 1's is that the term: 1) has been used as a medically incorrect, anachronistic label for them by an uninformed clinician, 2) or it is perceived to be an attack on their personal handling of their disease. Worse yet, some seem to generalize it to be an implication that they are somehow feeble minded themselves.

My experiences on the professional side have revealed that clinicians sometimes avoid the term because it is not viewed as politically correct. I can understand a negative, irritated patient reaction to a word like that, especially when one is not feeling well, and has explained their disease to blank faced clinicians over and over again. While I have had many...many...negative experiences as a patient, the word Brittle doesn't bother me.

I think it's a perfectly legitimate term when used properly. In my opinion, the word "brittle" is useful to describe a Type 1 Diabetic who has difficult to control disease.  BTW: I also don't have a problem with being called a "Type 1 Diabetic" as opposed to a "person with diabetes;" it's not all of me, but it's a permanent and pervasive part of who I am. After all, if someone is constantly having to check, weigh, measure, adjust all day.everyday and twice in the middle of the night.just.to.stay.alive.---then that seems like a pretty brittle condition to me.

As *people,* however, those "brittle" type 1's are probably paragons of strength, determination and ingenuity. I know my experiences as a "brittle Type 1" have honed my ability to adapt more than anything in my life...well, except for parenthood. Using the term accurately might actually empower those with difficult to control disease, instead of denying the "elephant in the room." Many professionals work under the assumption that all "diabetics" are created equal and will have blood sugars of "100" all the time as long they're motivated. This type of misunderstanding regarding what goes into staying afloat with Type 1 has definitely been disempowering when I have encountered it.

Some may be better off if we allow the word brittle to be used and accepted as a modifier. Perhaps pouring some of the negative energy used to oppose it into defining and applying the term appropriately would be useful. Eliminating "brittle" and it's implications, in my experience, actually further confuses some clinicians into thinking that type 1 diabetes is not a problem. I've experienced medical professionals who think it's just a "side thing" where "the patient" has to eat angel food cake instead of pound cake because "sugar." BTW: I have had actual clinicians *verbalize* the "pound cake" thing and countless advice like it. There also seems to be a common attitude that "patient empowerment" is all that is needed to keep someone well. While feeling motivated and empowered can assist with some aspects of disease management, it is unfair to assume that, that is all it takes, or that empowerment and motivation will always manifest itself in the way a healthy clinician might expect. After all... I didn't, we didn't ask for this.

Some of my experiences as a patient are akin to being fed to wolves. That said, I have also met a handful of amazing clinicians who have been just as great as the above described short sighted ones are bad. So, I have lots to say about the medical community and their understanding of what some call the "Orphan Disease." For now, though, I need to get my onset story out.