The cramping, diarrhea, and rectal bleeding became so severe that Long finally met with a gastroenterologist, who diagnosed her with ulcerative colitis. Although she began taking medications, she still experienced debilitating symptoms, including a bout that left her curled in the fetal position on a hotel bed during her family’s multi-day Thanksgiving tradition. “I spent the whole time sick and missed out on everything,” she explains. “That’s when I decided enough was enough. I couldn’t live like that.” When Long began researching her condition online, she discovered that changing her diet might help control some of her symptoms. Acting as her own health advocate, Long adopted a high-fat, low-carbohydrate diet and began to see her symptoms lessen — and in some cases disappear. “It was like I cracked the code!” she says. “I knew I’d stumbled on something that could help others with UC. And I wanted to share that.” Soon after, Long started an Instagram feed and blog detailing her struggles and hard-earned tips with others. She built a social media following (@cleanketolifestyle has 23,000 followers and counting) and even landed a book deal: Clean Keto Lifestyle was released in 2018. Long believes that opening up to others can be a good thing. “Sharing my story has been a blessing,” she says. But not everyone may be ready to talk about their health history online. Thinking about sharing your story publicly? Read up on these the pros and cons before you publish.
1. You can find (and give) support.
Opening up to others on social media can have many benefits, says Dana Lukin, MD, a gastroenterologist at Weill Cornell Medicine, in New York City. “One of the biggest advantages is the identification of patient advocates and physicians on platforms such as Twitter, Instagram, and Facebook.” When Raina O’Dell, a health and fitness coach and mother of two, was diagnosed with UC in March 2016, she didn’t know anything about — or anyone dealing with — the autoimmune disease. But when she began sharing her personal journey, she was amazed at the outpouring of support that she received. “It really tugged on my heartstrings,” she says. Similarly, she’s also able to be a source of encouragement for other people who are dealing with the disease; O’Dell’s Instagram account (@rainavsfood) has more than 72,000 followers. “I’ve actually been shocked at the response I’ve gotten by being so open about my illness,” she explains. “I’ve had people reach out and open up, sharing their own struggles, asking for advice, and just being an ear for people who really don’t have anyone else that can relate.”
2. You can share advice and tips with others.
Through lots of research (and some trial and error), Long eventually found a diet that worked for her. Now she’s hoping to teach her hard-won lessons to others. First on her list is helping people find ways to work vegetables into their diet. “So many people think that with UC you don’t have to eat veggies,” she says. “That is so not true!”
3. You have an opportunity to raise awareness about the condition.
“General knowledge and awareness about ulcerative colitis and inflammatory bowel disease … is very lacking,” says blogger Rhian Williams, whose Instagram account (@rhiansrecipes) following is upward of 36,000. (Her blog, Rhian’s Recipes, also features hundreds of UC-friendly recipes.) “So I felt that if I were able to raise even just a small amount of awareness about it, it could only be a good thing.” “An additional benefit of social media is the involvement of the major GI societies,” says Dr. Lukin, including the American College of Gastroenterology (@AmCollegeGastro), American Gastroenterological Association (@AmerGastroAssn), and Crohn’s and Colitis Foundation (@CrohnsColitisFn). As for Long, she says that her role as a social media influencer is to spread awareness to not only those who have UC but also those who do not. “My biggest responsibility is to educate others and help them improve their health,” she says.
The Cons of Sharing Your UC Journey Online
Not everyone is positive and cheerful on social media, and if you open up to others, you might experience negativity.
1. You might receive some unwanted (and unsolicited) advice.
“If you’re open and vulnerable, there will be people who hate,” says O’Dell. “I’ve been told to eat a cheeseburger more times than I can count and that I ‘looked better before.’” Still, when the negativity gets to her, she focuses on all the positive support she’s received in the past. “That makes those one or two negative comments a lot easier to deal with,” she says. Other people, says Lukin, may not be reputable sources of information. “While much of the information available on social medial is positive,” he says, “patients should be cautioned that there is also a lot of misinformation, pseudoscience, and individuals aiming to profit off of products that are recommended.”
2. You may feel scared at first.
“I was really nervous about opening up at first,” says Williams, “because I’m naturally quite a private person, and it’s always daunting to share something so personal about yourself with complete strangers.” But after speaking up about her condition, Williams says she was able to overcome her fear and now feels empowered.
3. Yes, you’ll probably feel embarrassed.
Not everyone feels comfortable talking about their bodies, so talking about your gastrointestinal condition may seem especially daunting. “It’s not something you want to share,” admits Long. “You can’t control your bowels. Nobody wants to talk about that! You’re throwing your story out there, and it’s subject to scrutiny. And it may be something that nobody — your coworkers, your friends, your neighbors — knows you’re dealing with, and now they do. That’s hard.” All caveats aside, Lukin thinks social media can be a good thing for people with ulcerative colitis. “I believe it’s a fantastic way to learn, network, and develop a virtual support system,” he says.
