The year was 1992, and Jill Osborne had just finished graduate school and landed her first significant job when a freak event changed her life forever.
“Life was good,” Osborne says. “I had my masters in psychology, and was moving
Forward. Then everything changed. I went swimming one day in a pool that had massive amounts of chlorine in it, without a warning sign posted. Within days, I couldn’t sit without crying from the pain.”
Osborne had developed interstitial cystitis (IC), a debilitating and long-lasting condition that is sometimes known as painful bladder syndrome. IC is characterized by frequent urination and intense pain.
“It got to the point where all I could do was pace, and one of the doctors I visited told me I would be forever disabled and a burden on my family,” Osborne recalls. “I remember thinking, ‘How dare you say that to me?’ and deciding then and there that I would prove him wrong.”
Osborne’s answer was to start a support group that would reach other IC patients in their homes. After finally finding a doctor who provided her with relief, she began looking for ways to educate others about this often-overlooked condition.
“I wanted to bring support and resources to people like me who couldn’t get to meetings,” Osborne explains. “People who have bladder conditions usually hide and are too embarrassed to ask for help. IC is an invisible illness, and might be minimized by the patient’s family and friends, but it is real and it is treatable. The federal government has dedicated $100 million to IC research in the past decade, and every patient deserves care.”
IC-Network.com, Osborne’s first online support group, morphed into an extensive network with around 250,000 monthly visitors. Now the site has reached 90 countries, offers information on a variety of IC topics and has won numerous awards. Osborne says that the site continues to offer current information on living with interstitial cystitis, making IC Network a valuable resource for patients, their families and health care providers.
“After my diagnosis, I needed to prove that I was valuable. I really want people reading this story to know that they can do it too,” concludes Osborne. “I was told that my idea for an online support group was stupid and that no one would use the Internet for support. But the difference in philosophy is what made this work; I believe every single person who contributes an idea makes the IC network stronger. The IC network gave me work that I am proud of, and it showed me that the true lesson of life is being there for other people. It’s not the money you make that is important; it’s the life that you change.”