A young woman named Roxy recently posted a plea for help.
“I’m disgusted with myself,” she writes on the web. “I’m having a real hard time with food. I am an uncontrollable eater, that’s all I want to do. But it’s not healthy food…it is chocolate bars and chips or 7-11 food. One day I ate four chocolate bars!!!!!!!! I cried because I know what I’m doing and what can and will happen to me, I want to change so badly but I need a lot of help I don’t know what to do for myself.”
Roxy has Type I diabetes, an autoimmune chronic condition with unknown origins. Her pancreas doesn’t make insulin, the hormone that breaks down carbohydrates, so her blood sugar levels register in the unhealthy range. Left unchecked, her eating habits could cause organ failure, induce a coma, even kill her.
But another diabetic who’d been through similar struggles and emotions answered her call with a combination of tough-love pep talk, sound advice, and compassion.
“You’ve already done the first part, which, I think, is admitting and being honest about what’s really going on,” 23-year-old Ginger writes the same day her post appeared. “The second part, though, is forgiving yourself for not being perfect, for struggling with something is incredibly challenging and knowing that it’s okay.” Ginger then walked Roxy through some practical steps to getting her blood sugar under control, as well as her life. Other diabetics wrote in as well, with advice on where to get supplies, tips for eating, and, perhaps most importantly, emotional support.
Ten days later, Roxy reported that her blood sugars had improved. She was keeping a food diary and recording her workouts, all of which she posted online. “It has only been a couple of weeks,” writes Roxy, “and I already see a little improvement, just a little, but I will get there, I have to I made a promise to myself.”
Roxy’s virtual guardian angel, Ginger Vieira, is the de facto traffic cop and camp counselor for DiabeTeens, a website where young people with Type I diabetes can go to get advice, blog, talk in chat groups or simply rant about their condition. A new kind of medical website, DiabeTeens’ is creating a community of 13-to-25 year-olds who struggle and triumph with their life-long disease. Speaking their language, Ginger is someone who’s been there, done that.
“Kids have so much guilt because doctors say you have to have your blood sugar perfect or your suffer complications,” she says. “They think ‘I might as well give up!’”
In addition to dispensing practical advice on determining appropriate insulin levels, Ginger offers tips on everything from how to manage overbearing parents who don’t understand feelings associated with diabetes to tell ing someone you have a crush on that you have a chronic disease. “The hardest part isn’t remembering to take insulin, but balancing your life,” she says.
DiabeTeens is one of 35 communities on http://www.healthcentral.com, a hub for health sites that deal with specific diseases and conditions like migraines, Alzheimers, breast cancer, and HIV/AIDS (to name just a few) that not only gives viewers medical information, but access to people in the same stage of life who can talk to each other about how to live. Having Type 1 diabetes when you’re 16 is much different from having the condition when you’re 47, the folks at Health Central surmised when they created the site. “Lots of diseases have a unique impact on kids at certain ages,” says Health Central’s CEO Chris Schroeder. “Age is important.”
Though there’s a healthy amount of medical advice on Health Central’s various sites and doctors available for counseling (DiabeTeens has Dr. Fran Cogen from Children’s National Medical Center), the thing that makes the site work is people who have experience with the actual condition, like Ginger.
The New Hampshire native first began to feel the effects of her diabetes when she was 13 years old. No one knew what was causing her flu-like symptoms until she checked in to a hospital. Blood and urine tests quickly revealed she had Type I diabetes (also known as juvenile-onset diabetes.) Unlike the more commonly known Type II diabetes that often results from an unhealthy lifestyle, Type I may be genetic or the result of a viral exposure—and there is no known cure.
After hearing the diagnosis, Ginger spent a couple hours crying. Then, she asked the doctors if she was going to die.
Throughout her decade-long struggle to deal with her condition, Ginger saw many doctors. “There are a lot of endocrinologists who treat Type I diabetics,” she says. “There are very few who are actually helpful. They treat the disease, not the person.” Ginger figured out how to manage her disease by testing her blood sugar several times a day and taking the appropriate amount of insulin to maintain a normal level. Now, the 23-year old is a personal trainer, yoga teacher, and weight lifter. In fact, she leg presses 600 pounds. She knows, at this point in the game, the more muscle she puts on, the less insulin she needs. But she learned this only through trial-and-error.
But managing diabetes is not an exact science for her. “I’m my own life-long science project,” she says. “I have the disease and know what kinds of things kids are confused about,” she says. “Many suffer so much guilt over not being perfect. They think ‘I might as well give up.’ They forget they’re not the only person it’s hard for…It’s such a 24/7 burden.”
A burden, she hopes, can be lifted—or at least eased—with words of experience and a little compassion.
First appeared on rd.com, November 24, 2008.