More and more arthritis patients are turning to the Internet for support. Here’s how three women use social media to boost their spirits.
Wouldn't it be great if you could just push a button whenever you needed to vent to a sympathetic ear—someone who gets it when your hands hurt too much to turn a doorknob? For Elizabeth (Lizzy) Wald, who has rheumatoid arthritis (RA), that special "ear" is always on standby: "If I'm having a bad day, I just log on to my Facebook for support. There's always someone day and night who's going to be there for you. And you can't always get that in the real world—your friends might be working and your husband's sick of hearing you!" she laughs.
Ironically, when Elizabeth first started using online media in 2010, it wasn't to find like-minded women with RA: "I was scared to death of the Internet and never wanted a Facebook account. I only went online to sell jewelry because it was too painful carrying all my stuff to shows," says Elizabeth, 49, who makes custom jewelry at her home in Port Chester, NY.
So what changed her mind? "It all started with Niki [Wyre]. She got me out of that isolation and made me feel like a part of something. She's been a big backbone of support, and it's all wrapped around the same thing: Thank God, I'm not alone!"
Elizabeth "met" Niki when a friend recommended her Facebook page, "RA Chicks: Women with Rheumatoid Arthritis." And even though they're separated by 1,000 miles (Niki lives in Clearwater, FL)—Elizabeth felt an immediate kinship after reading her posts and emailed her privately once they became Facebook friends. One of the first questions she asked: "How do you explain RA to others—especially when they say you look fine?"
Niki's reply: "Lizzy, I really understand when people are clueless about RA. But I also realize that people want to learn. Teach them! When they say, 'But you look well,' I answer, 'Thank you, but inside my body isn't always doing as well, even when I'm looking my best.' "
Niki, who's 32, was diagnosed with RA three years ago. She says it's tough to find the right arthritis support group. "Most members have osteoarthritis. They rarely discuss autoimmune arthritis."
And when 54-year-old Christine Bryan, a nurse who's an RA Chicks Facebook member and phone pal with Elizabeth, was first diagnosed 27 years ago, people weren't even encouraged to find a support group. "The doctor just handed me a stack of pamphlets that seemed to imply my life was over. My son was only a baby at the time—that was not what I wanted to hear."
Niki knew there was an unmet need in the arthritis community after her website, RAchicks.com, grew from just five members ("We kind of started it on a whim," she says) to more than 11,000 in a few years. Now she spends much of her time as a patient advocate. And she continues to be Elizabeth's biggest cheerleader: "Niki inspired me to create beautiful medical alert bracelets that women would want to wear daily," says Elizabeth, who showcases her gemstone jewelry at StonesinHarmony.com.
Adds Elizabeth: "You can always log on for support, whether it's for mentoring or to get inspired, or if you're having a bad day and need to vent. Having RA showed me how compassionate people really are—and made me more compassionate." Here, Elizabeth and other patients explain how to make the most of social media:
Ask around first. Rather than do a broad Internet search, try to get a recommendation for a specific website or Facebook page to visit. "It's like when you want to buy a car," says Elizabeth. "You don't just search online—you call a friend." If you don't have someone you can tap, ask your doctor if other patients have mentioned a good site.
"Listen in" before logging on. "Read others' stories first," suggests Elizabeth. "You don't have to reply to anything. Just observe, and you'll probably end up wanting to participate."
Consider anonymous forums. "Some people don't want family or friends to see their RA posts," notes Niki. "Others don't want co-workers to know. That's when private forums come in handy because you can log in with a user handle." Another option: "Some of our members have a second Facebook account just to connect with others about their condition."
Establish boundaries. After 34 years of nursing, Christine, who lives in Dillwyn, VA, knows how important this is. "Don't allow yourself to get caught up in other people's drama," she cautions. "And don't rush to give—or take—advice. If it's a medical issue, talk to your doctor first."
Steer clear of negativity. "You'll see pretty quickly who's judgmental or constantly negative," notes Christine. "If you're logging on and have a feeling of dread, like Oh no, I wonder what she has to say today, run—run for the hills!" she laughs.