This Wednesday evening I had the privilege of speaking at the Behavioral Diabetes Institute in San Diego, alongside its founder Dr. William Polonksy. Not that we gave formal lectures or anything. In fact, the session was a great communal discussion of everything that's exasperating and frightening about living with diabetes -- a really good "group gripe" that I'm surprised to say I thoroughly enjoyed.
Isn't it kind of twisted to feel energized by a room full of people airing their frustrations? But I was (energized, I mean). As noted before, I've never been one to attend support groups and such. But looking out across a room full of people at the BDI nodding their heads and smiling as I checked off all the indiginities of life with diabetes, it suddenly hit me what "group therapy" means and how very powerul it can be. Here were a bunch of other human beings (face-to-face for once, rather than virtual pen pals) who in many ways understood me better than my own best friends. Together, we upacked a suitcase-full of D-induced emotions:
A bearded gentleman in the back of the room said he'd had diabetes for 12 years before a medical professional suggested he ought to be seeing an endocrinologist, rather than his primary care physician, who'd been doing a pretty lousy job of helping him with his diabetes all that time. Why did it take so long for him to get this critical advice?! Seems his PCP had no incentive to refer him away, needing to retain patients in order to keep his practice solvent. But this is my life we're talking about!
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A heavy man in a wheelchair with a very kind face shared his troubles with heart disease: he's been in and out of the ER with 14 angioplasties, and has also had chronic bronchitis for months. It seems to take forever to mend when you've got diabetes. He's so congested he can barely breathe at night and his back aches, to boot. I keep telling my doctors, I'm feeling more and more depressed, but they just ignore me.
A very fit woman in her '50s whose been living with diabetes for over 30 years has developed a "mortal fear" of her diabetes: she envisions herself not waking up in the morning. The trouble is, following a very severe hypoglycemic incident, she's simply lost faith in her body: what will it do next? Her hypo occurred as a result of a simple mistake that I too live in fear of making: she mixed up her insulin vials one night, and took 36 units of regular rather than Lantus. The last thing she remembers is lying on the floor with her hands shaking violently as she tried to get a cup of juice to her lips. If the mailman hadn't rung the bell and woken up my son, I wouldn't be here today...
A woman about my age with an injured foot whose been on the pump for seven years says she loves it on the one hand, but on the other, I still have something sticking in me! When she was recently hospitalized for surgery the doctors insisted that she remove her pump. Then they gave an order that she should receive 2 units of insulin for every 40pts BG over 180, although she's extremely insulin-sensitive. One nurse was ready to inject her right after her evening meal. Let me manage my diabetes. I know what I'm doing!
Ah, catharsis. Just airing all this tsuris seemed to refresh us somehow, because we ended up laughing. We made jokes about Tshirts that would state: "As a matter of fact, I CAN eat that" and about diabetes etiquette cards that would tell others what they ought and ought not say about our diabetes. But the etiquette cards were no joke, really: "I've got them ready," Dr. Polonsky said. "I'm just trying to figure out how to shrink it all down to fit in business-card format." Thank heaven for the rare doctors who really "get it."
** UPDATE: B.A.D. George said it best in his newest post: it's about finding a community that understands your situation, "Not in a 'misery loves company' sort of way but more of an 'I understand completely' way that people without diabetes (or without diabetes in their lives) cannot get." Ah yes, this is why I felt energized instead of depressed... **