Internet

Losing patients online

Despite concerns about the reliability of online medical sites, many patients say access to information is imperative. Some have even sworn off doctors altogether.

There she was, sitting in the hospital again--IVs pumping that "poison," as she calls chemotherapy, into her veins. Sherry Messick knew she'd be there for hours, just focusing on that pain, that horrible feeling that she was dying.

That's why Messick had her laptop turned on and plugged into the hospital phone line. Because this time, she didn't want to think about the pain. This time, she had told her Internet friends about her treatment. And this time, as she knew they would, they came through via email.

"They were just mailing me jokes, making me laugh," Messick said. "It's hard crying when you've got people telling you stupid, dumb jokes."

For many, the Internet is a great tool of technology and communication. For Messick, who suffers from a severe case of scleroderma, an auto-immune disease that can affect the body inside and out, the Net "gave me hope I never thought I'd find," said the 35-year-old Maryland resident.

That hope is spreading as fast as the Net itself. While a few people with illnesses find relatively little information on the Net about their conditions, thousands--maybe millions--like Messick have come to see the Net as one of the strongest allies in their struggle toward well being.

Some have even sworn off doctors altogether, instead turning to their online communities for help in time of need. Not only do many get information from online medical journals and doctors, but they have also found friends, support, and links to knowledge about topics such as alternative health care available nowhere else.

Now, when Messick goes to the doctor, she's armed with material from the Net that helps in her treatment. She understands her blood tests and lab results. She's able to ask intelligent questions. When she has a problem, she asks people she met through the Net.

Others with her ailment have been able to make a huge impact with just a little common-sense advice, such as telling her what kind of hairbrushes and doorknobs she would be able to handle. A doctor online suggested that she might have her physician examine her for a common jaw ailment that had been previously undiagnosed.

Before she hooked up to the Net--a mere six months ago--Messick had good support in her family, but she didn't know anyone else with scleroderma and she knew next to nothing about the disease from which she had been suffering for eight-and-a-half years.

"We went and got unlimited access," Messick said. "The first day I got on I saw 'Net search,' and I just typed in the word scleroderma and found one site, and that got me started. I just surfed and searched and clicked and browsed and found all these links and all this information."

Just a few months later, Messick was so hooked that she created her own Web page, complete with frames, chat, bulletin boards, and music. She hopes that she will be able to give to others what they've given to her.

The information and people she met on the Net "gave me hope I never thought I'd find. It gave me knowledge about this disease. It also made me appreciate people more. It's changed the person I am. I'm more calm now. I'm not as nervous and worried. If I'm frustrated, I just get on the Net. It's really changed my life. It's made me more functional."

Messick is far from alone when it comes to people seeking help on the Net for their ailments. Bulletin boards and Web sites are filled with questions and information about everything from acne to cancer. Some, like Messick, started searching out of curiosity. Others, like Christine Inman, turned to the Net when other avenues failed.

Inman, a procurement officer for the U.S. Postal Service in Massachusetts, started using America Online (AOL) with its extensive health boards two years ago. She wanted more information about the malady that has befallen both her and her husband: Chronic Fatigue Syndrome, an illness so new and controversial that some doctors say it doesn't exist, and those who do vouch for it have almost no understanding about what causes or cures it.

The first thing Inman found online was a support group. Then she found information from other patients--information that she's now convinced has put her illness into remission and has allowed both her and her husband to live relatively normal lives.

Inman, who had seen several well-known specialists in Boston, at first was skeptical of some of the more "alternative" health advice, such as taking algae and changing her diet. But when her husband got violently ill and wound up in the hospital, she decided she'd try anything.

"When he was in the hospital, I spent about three days nonstop just searching and searching," she said. "I learned more in three days than the doctors taught us in ten years."

She found sets of symptoms that matched his perfectly. Concluding that he was suffering from food allergies, Inman had her wary husband change his diet. It worked.

Today, Inman is healthy too. Her doctors don't believe that the recovery resulted from the alternative treatments, but she doesn't need them to believe.

Unless she develops a major problem, Inman pretty much has given up on doctors. "I've gotten to a point now where if I talk to ten people who are dealing with chronic fatigue, I put more stock in that than what the doctors tell me. I have no use for doctors anymore."

Messick isn't at the point where she can--or would want to--completely give up doctors. But the knowledge she's gained has helped her find the right physicians and help for her treatment.

Not everything she's encountered online has been inspirational. "I've had three people in the six months I've been on [the Net] who I chatted with daily and emailed with daily and they've died," she said.

Still, she refuses to get discouraged. Real lives and real deaths are all part of finding a real community--not some cyberfantasy world that the uninitiated often envision. And Messick wouldn't trade it for anything.

"I would never, not in a million years, give up my Internet service. I will eat bread and water first. I will have the Internet forever. It's my light into the world." 

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