Both Zoe Rothblatt and Cheryl Crow understand the benefit of social support when living with a chronic illness. They use social media as a means of sharing evidence-based information, support, and practical tips for coping with chronic illnesses.
Cheryl Crow, 41, is an occupational therapist and founder of Arthritis Life living in Seattle. She was diagnosed with rheumatoid arthritis and has tried multiple biologic medications along with methotrexate since her diagnosis in 2003.
Zoe Rothblatt, 27, is the Associate Director of Community Outreach at the Global Healthy Living Foundation (GHLF). She was diagnosed with Crohn’s disease in 2015 followed by spondyloarthropathy in 2016. Like Cheryl, Zoe has tried several treatments over the years.
“We became connected to each other through social media because of the popularity of our accounts, and we now collaborate on posts,” they write in their patient poster titled “From Practical Tips to Heartfelt Encouragement: How Social Media Can Improve Quality of Life with Rheumatic Disease,” which will be presented at the ACR Convergence 2022, the annual meeting of the American College of Rheumatology. “While our initial focus has been on providing education via social media, we quickly discovered that the comments sections of our posts were full of helpful information as well.”
In their poster, they documented multiple examples of improvements to quality of life over conversations through social media. “I showed a demonstration of a knife then someone in the comments asked about using a rocker knife,” says Cheryl. “This was something I had not thought of before.” The commenter’s suggestion led Cheryl to find more success and less knuckle pain using a rocker knife to cut vegetables.
Following a post from Zoe regarding side effects from medication, a commenter suggested taking leucovorin calcium after methotrexate to relieve symptoms. After consulting her doctor, Zoe now takes leucovorin and finds the side effects have diminished. In their poster, they write, “For Zoe, social media has helped normalize her symptoms. Zoe feels empowered to advocate for herself and speak up at doctor’s appointments and is able to better manage her conditions because of the social media community.”
Both Cheryl and Zoe acknowledge that social media is often frowned upon by professionals in health care because many innovative ideas presented are not proven by research, but they aim to change the mindset of health care providers. “I encourage providers to look at social media as a beneficial form for impacting health care,” says Cheryl.
What Zoe and Cheryl Learned – And What You Can Learn Too
Here, we talk to them about their experience submitting a patient poster for ACR and what they hope others will take way from their learnings:
CJ: What was your motivation for submitting a patient perspectives poster?
Zoe: Cheryl and I found inspiration in each other. I participated in past conferences as a Global Healthy Living Foundation (GHLF) staff member, and the sessions always seemed geared toward researchers. While these conferences are about patient care, they aren’t really about involving patients. I wanted to be part of the patient voice to bring research back to the patients. The patient voice can get lost in all the medical jargon, so it’s important for patients to share their story. I wanted to be a piece of that.
Cheryl: A lot of health care providers have a very negative idea of social media because they have patients who may share all kinds of ideas that may not be studied and proven by research. During the pandemic the connection with patients has been a lifeline through social media.
CJ: What are you most looking forward to at ACR22?
Zoe: “It was exciting to talk with other patients and feel that sense of community. We met up online together to talk about the upcoming conference. I’m excited to go into ACR with sense of community among all of the patients. Having the patient perspective makes it fun.”
Cheryl: “I like that at this conference I’m attending as both a patient and a trained health provider, and I can work on translating the research into something that patients can learn from. I’ll be learning about how to help myself and others with what is new with research. With sessions I run for Arthritis Life, I want to help get answers to the most pressing questions and bring them back and translate them into my work and into my social media content.”
CJ: What do you hope people will learn from your session?
Zoe: “I hope people will see the positive of social media and how helpful it is. Social media has helped me to buy new gadgets and it can really play a role in your overall care. When you talk to someone with a chronic illness, everything you think and feel suddenly become real, so I’m more likely to bring it up with my doctor. Before I might have minimized symptoms I was experiencing, but the validation from other patients empowered me to speak about it with my doctor.”
Cheryl: “From the clinician standpoint, I hope they realize that social media is not just a medium for people to share in a self-centered way; it’s a way for people to problem-solve. I hope people find heartfelt support and encouragement in addition to ideas. It’s powerful to give people encouragement to do their injections, for example. Some social media posts are for information-sharing about daily living strategies and some are also for encouragement and validation to say you can do it — we see you; your pain is real. It has huge mental health benefits.”
CJ: Why is it important for patients like you to share their own research at ACR?
Zoe: It’s important because it goes back to personalized medicine. There isn’t a one-size-fits-all approach for treating patients, so the more doctors can see the perspective of patients, the more they will begin to personalize medicine. There’s not a lot of diversity in patient perspectives, so I also think this is a great way to bring in more patients and more diverse experiences.
Cheryl: I do wear multiple hats. In general, patient representation is important to humanize what we are talking about. Having patients involved in academic conferences humanizes and validates that patients are equal partners in their ongoing disease management. People who live with their conditions 24/7 are problem-solving and often noticing, for example, that they hold their pen a certain way. I hope the practitioners are inspired by ideas patients come up with; patient-generated ideas are just as valid as ideas shared by providers.
CJ: What did you learn about yourself and your health journey by working on your poster?
Zoe: Just talking this out with Cheryl made me realize how important social media is to my own health journey. I realized how much I need to connect with other patients to improve my health journey.
Cheryl: What I learned is there is so much value in what I can get in participating in the comments section of posts. My aim wasn’t to create new content but it reminded me in how important it is to look at conversations like with the adaptive knife post. It made me respect the thoughts of patients even more and see how excited patients are to share ideas they have on their own. Working on it allowed me to see how many great ideas there are from other patients. I learned I need to spend more time interacting with content, rather than always putting out content.
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.
Crow C, Rothblatt Z. From Practical Tips to Heartfelt Encouragement: How Social Media Can Improve Quality of Life with Rheumatic Disease [abstract]. Arthritis & Rheumatology. November 2022. https://acrabstracts.org/abstract/from-practical-tips-to-heartfelt-encouragement-how-social-media-can-improve-quality-of-life-with-rheumatic-disease.