It seemed like a blessing. Just a few months after the birth of my third daughter, I had lost nearly all my pregnancy weight. I was fitting in to my favorite jeans, and my husband was joking with me about my girlish figure. Sure, I was tired all the time, but that's no surprise with three kids under the age of 5. But my vision was sometimes blurry, and I was parched and famished nearly all the time. Finally I went to see the doctor. A few hours later came the call back from the hospital: come in immediately and stay for a few days, or risk falling into a coma.
I was 37 years old and had been diagnosed with type 1 diabetes—the insulin-dependent kind, not the diet-and-pills-treated kind, which is known as type 2 and is 90 percent more commonly diagnosed among adults. Type 1 is an autoimmune disease that typically strikes children but is becoming increasingly common in people 20 and older. Why it shows up at certain ages is unclear, but a diagnosis often follows an illness that weakens the immune system. In my case, I had been sick with the flu right before I began experiencing my symptoms.
Suddenly my life became all about poking my finger for blood samples to monitor my fluctuating blood glucose levels a dozen times a day, injecting insulin at least six times a day, and constant worry about my diet, activity level and how all of this affected my glucose readings. If my blood sugar went too low, I might pass out. If it went too high, I'd feel listless and irritable and I'd be increasing my risk of serious "diabetes complications"—including blindness, kidney failure and leg amputation. I felt frightened and alone in ways I've never imagined before. Desperate for guidance, I was reduced to setting up coffee dates with friends of friends of friends who might know someone who has type 1 diabetes.
Naturally, I turned to the Internet. Here I would find fellow patients who could help me understand what was happening and demystify my symptoms. Or so I thought. It was 2004, and back then all I could find was a dizzying array of medical journal articles and bad-news headlines—almost all of them incomprehensible for a new patient like me. Where were the other people living with diabetes?
Frustrated, I began searching for a way to share my own thoughts and feelings online. I thought it would be fun and cathartic to document what I was learning about carbohydrate counting, insulin dosing, new glucose meters on the market, and more. I figured I could use my experience as a writer for the high-tech industry to report on happenings in the diabetes world. I could also share my personal experiences, in the hope that other patients would respond in kind. So began my journey into emerging online patient communities.
In fact, the timing was perfect. Had I been diagnosed in 1999 or even 2001 I would have had no means to self-publish on the Web. But as luck would have it, my idea to create a place for patients on the Web took shape in January 2005. New software had just been introduced allowing anybody to create an online journal they could update any time. The idea that the sentiments I was sharing could be read by anyone, anywhere on the planet was almost too much to take in.
I began to write. I called my site DiabetesMine.com—a play on words for "It's mine, I'm stuck with it" and the notion of "a gold mine of straight talk and encouragement for people living with diabetes."
And the people with diabetes came. They gave me great tips about coping with diabetes. Sometimes they argued with me. Often they said thank you for putting myself out there and helping them feel less alone. A few of them actually made me cry.
I've been writing my Web site for three years now, and some amazing things have happened. First, I learned all sorts of facts about my own health that doctors never told me. I learned that thousands of other people out there have been diagnosed with type 1 diabetes later in life, like me—a condition called LADA (latent autoimmune diabetes in adults). From other patients I also learned essential basics about related conditions, like gluten intolerance (celiac disease), and Raynaud's syndrome, a circulation disorder in the hands—both of which I suffer from, along with the diabetes.
Second, a whole community of "patient bloggers" has grown up around me—hundreds of other people sharing their health challenges on the Web. We exchange treatment and insurance tips, hold online chats, link to each other's sites, and even manage to meet in person sometimes.
Through blogs and online communities, an enormous army of increasingly well-informed patients is forming, and we're actually challenging the traditional model of health care in this country. With free access to all sorts of medical information, patients like me can drive our own care for the first time in history, by asking the right questions and demanding the latest and greatest drugs and devices. So ends the stranglehold of doctors and health insurance companies on information and treatment options.
I soon discovered that my own little blog had upward of 50,000 readers each month and comes up in the top three when you Google "diabetes blogs"—a search that thousands of surfers must be doing every single day. Now I find myself suddenly being approached by dozens of companies interested in my site. They either want me to review their products, have my Web site linked to theirs, or even offer me money to advertise—a direct channel for the 21 million Americans living with diabetes.
Everyone from Google and Microsoft to a bunch of small start-up companies and venture capitalists in Silicon Valley is getting involved in this explosion of new Web-based "personal health technologies." The big software companies are creating sites where people can collect, store and share health records for their whole families. Numerous smaller companies are busy creating places like MySpace or Facebook, tailored to people living with various illnesses, from sleep apnea to diabetes to Lou Gehrig's disease.
From my side, I'm just astounded to think that one sick mom in California can reach out to so many fellow patients, create a community, and actually turn the whole thing into a business. It sure has helped me feel a lot less alone and a lot less frightened about living with diabetes.
To submit your own story of a health triumph, click here.