Carol Eustice: Arthritis Advocate & About.com Health Writer

by Stacey Cahn, Chief Correspondent, CreakyJoints

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Health Writer & RA Advocate Carol Eustice

Like most successful columnists, Carol Eustice writes from what she knows.  And Carol knows about Rheumatoid Arthritis. The highly regarded health writer and original About.com arthritis expert was diagnosed with RA at the age of 19, just before entering her second year of college.

“I had an aggressive type, so it seemed,” she recalls, “but perhaps there just weren’t treatments that were able to slow the progression of rheumatoid arthritis back in the mid-1970s.”

Carol was able to graduate and work in her chosen field as a Registered Medical Technologist in a hospital while trying to manage her disease.  (She underwent what would be the first of 13 surgeries <a hip replacement> at age 24).

After 16 years of working in the lab, Carol needed to give her body a break and took a year off, trying to decide what to do. Around this time, she discovered the Internet, started and moderated the first weekly Rheumatoid Arthritis Chatroom/Support Group on America Online.

“In hindsight, I was looking for some support myself – but found no chat groups for people with chronic illnesses,” says Carol. The group grew so large, so quickly that it had to be limited to RA.  She made friends in that chatroom who remain friends, and Carol notes, “I also met my second husband in the RA chat on AOL. So I have lived RA from many perspectives.”

Carol was hosting the chat in the mid-90s when her brother sent a magazine clipping, seeking writers for a startup called “The Mining Company” (which changed its name to About.com in 1999).  He told her to “write about what you know most about.”  Great advice, but for Carol, that meant arthritis.  She applied, got hired and has been writing about arthritis for 17 years.

Simply put, Carol loves her job:  “I am blessed to have my gig with About.com. I am able to set my own schedule, and that is the most important factor. If I have a bad day, I can rest, and work the next day.”

Carol at home with her "copy editor", Mocha

Carol at home with her “copy editor”, Mocha

Through her writing, Carol helps people who are newly diagnosed with arthritis understand essential information about their disease as well as practical advice about managing chronic illness long-term. Her suggestions for coping are based on experience, hers and others. She believes: “It’s important for every patient to understand their disease, know their treatment options, understand the importance of compliance with treatment, recognize the benefits of regular physical activity for maintaining or improving joint function and more.”

Along with providing information, Carol is determined to clear up misconceptions about RA: “I think the most significant is that arthritis is a single disease. It is not. Arthritis is an umbrella term for about 100 different types. Of those 100 types of arthritis, about 10 or 12 are more common. Some of the rest are quite rare.”

The other great misconception is that arthritis is something that strikes older people.

As a patient and an advocate, Carol is open to talking about her health.  Right now, she says she is doing quite well, “There have been so many ups and downs over the years – trying different drugs, finding a great one, having a drug reaction, changing to one that didn’t work as well – then finding another very effective biologic drug.”

Within the last four years, Carol has suffered two stress fractures of her left leg and has a herniated disc in her back but things are looking up. “Now since that has healed and pain is under control, I am pursuing a strengthening program at a wonderful physical therapy clinic,” she explains, “underscoring the need to find great doctors.”

 

“If there was one point I would emphasize about arthritis, it would be this — find a highly-respected rheumatologist who is a good communicator,” Carol emphasizes, adding, ” Even then, YOU must be able to communicate your concerns and needs to your doctor, as well.  A doctor-patient relationship is a true partnership. Your well-being depends on it.  You are truly 50% of the team. “We must never stop trying to rebuild and restore ourselves – or the disease wins.”

 

CreakyJoints is a big fan of Carol, and Carol is a big fan of CreakyJoints:  “I learned of CreakyJoints many years ago, maybe when it first went online. I believe Seth (Ginsberg) emailed me about my website. I have watched CreakyJoints grow over the years and they offer a great user experience for people with arthritis. While they cover the important news and information, they also have a humorous perspective and a very personable approach. It’s a great community.”