Back to Basics
Talking about real-life diabetes concerns.
with Amy Tenderich
Editor's Note: While this columnist is no longer writing for dLife.com and we have ceased to update the information contained herein, there is much to be read here that is still applicable to the lives of people with diabetes. If you wish to act on anything you learn here, be sure to consult your doctor first. Please enjoy the column!
April 2008 —All this new snazzy online stuff for people with diabetes is great – for the power users, that is. Meaning it's all great for the people who have the know-how and are in a financial position to spend time "playing around" on the web. Of course what they find here can help them in real life, too. But what we have to recognize is that access to decent healthcare –- even in the traditional off-line format –- is a major issue for many communities in this country. Who is going to help those folks with their most basic needs?
Meet Florene Linnen: The Diabetes Angel of Georgetown, SC
I discovered Florene (quoted in last month's Straight Up) through James Hirsch's wonderful book Cheating Destiny, in which he mentions her and her rural community of Georgetown County, where about half of the black community is believed to have diabetes. I say "believed" because thousands in that part of the country are as-yet undiagnosed. But as Hirsch points out, in some families three generations at once are undergoing laser treatments, dialysis, organ transplants, and amputation.
Florene has been living with type 2 diabetes herself for 23 years. She's devoted her life to "spreading the gospel" of diabetes care, quite literally taking educational messages and pamphlets to local churches where residents gather. "Here comes the diabetes lady," they say when they see her on the street. They call her "some kind of angel."
She actually just recently retired from the Georgetown County Diabetes CORE Group she helped found. When she did, she received the the state's highest honor, a Palmetto award, from South Carolina Governor Mark Sanford. Although she's no longer an official program member, at 65 she's still doing a ton of grassroots outreach. "Just like my husband predicted, I'm just working more for free," she chuckles.
When I spoke with her a few weeks ago she told me about the basic problems her community faces, just trying to eat the right foods -- which they often can't afford -- and having to literally make choices between filling expensive prescriptions or buying much-needed groceries or shoes for the family.
She happened to mention to me offhand that she was diagnosed with breast cancer four years ago (!) But that didn't seem to phase her a bit. "I don't dwell on it. There's so many people suffering out there with diabetes and cancer," she says. "Now I'm also doing things with cancer recovery. I volunteer for the American Cancer Society, so when someone gets diagnosed, I go into their homes and we talk about our experiences. That really helps people."
She was on her way to speak about diabetes at a health community luncheon that day, attended by doctors and other healthcare professionals. "I'm gonna tell them about the problems of communication between doctors and patients. There are really three concerns we have here in a community like ours," she said.
Common Pain Points
Attempting to capture Florene's voice, I summarize those concerns below. So simple, and yet so unaddressed...
1) The doctor doesn't talk to me in a way I can understand. He says, your A1c is high, but what is A1c and what does it mean to my health? The doctors assume you'll do what they say. We're not questioning the doctor's ability, but we just don't understand what the doctors are saying half the time.
2) We're hurting for money. The doctors say patients don't follow instructions. But if people here have to buy a vial of pills for $50, or buy shoes for their kid, two to one, they'll buy the tennis shoes rather than get medication. And the doctors don't even give samples of a high-priced medication beforehand to see if it works -- before writing prescriptions. If you take one pill and you break out, then that's a huge loss for low-income patients.
3) The doctors don't listen. They rush you in and out. I've heard that from so many patients. They don't get anything out of that appointment. Meanwhile, the doctors feel patients don't take their health seriously. It's a big disconnect.
4) Eating right? That's hard, just to afford it. If a loaf of wheat bread goes for $3.19, and somebody sees a big pack of cinnamon buns for $1.49, they'll take the buns most of the time. Maybe they'll pick off the icing to make ‘em less sugary. But that food's more affordable. Also, down here, patients feel "we've always eaten soul food in our community" -- the fried stuff, the heavy stuff, the potatoes. Our parents and grandparents ate soul food and they worked it off. They were out on the fields or working physically all day. Today we eat all this food and we sit behind a desk. That's fat. That's ruining your heart. That's what I try to tell people, to change it up and eat more vegetables.
Florene's biggest contribution has been toward educating her community. Get tested. Understand the diabetes. Change your lifestyle. Now -- before you get really sick.
None of these problems will be solved overnight. But we sure could use some more Florenes in the world, addressing the very basics that can help prevent complications where prevention is needed most.
To put it bluntly, I'm just incredibly grateful for people like Florene, who seem to be able to give without limits, where diabetes hurts the most.
* Amy Tenderich is co-author of the new book, Know Your Numbers, Outlive Your Diabetes.
Read more about Amy Tenderich.
dLife's Viewpoints columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences, most often at a set point in time. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team before acting on anything you read here to find out what will work best for you.
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