When I was first diagnosed with rheumatoid arthritis (RA), my doctor urged me not to Google my condition. She knew the internet was full of misinformation, but unfortunately, she didn’t have reliable sources to recommend — especially ones that shared real experiences from fellow patients.
I longed to connect with others, to know I wasn’t facing this alone, and to learn how to live well with RA. So, I began blogging and joining Facebook groups. These communities opened my eyes to lesser-discussed symptoms, like fatigue and brain fog, which my health care team hadn’t initially mentioned.
Early on, I found myself overwhelmed, trying to sift through the sea of information — much of it misleading. I was desperate to find something, anything, that could alleviate my symptoms or improve my health.
I spent all my time, money, and energy into trying every suggestion or remedy I stumbled across online, hoping to feel better. In retrospect, I now realize I was moving through the stages of grief — denial, anger, bargaining, depression, and, eventually, acceptance.
Being open about my RA journey online has been incredibly rewarding. Sharing my story has brought me a sense of community and understanding. But I also want to acknowledge the darker side of social media. It’s a space where misinformation and harmful advice can thrive, and it’s important for patients to navigate it with caution.
The Myths Around Rheumatoid Arthritis
I found online communities especially helpful when it came to discussing the misconceptions and lack of understanding surrounding my disease.
There are numerous myths and stigmas about rheumatoid arthritis, like “it’s just joint pain,” “arthritis is only for the elderly,” or “it can be cured with diet and supplements.” But the reality is much different.
Rheumatoid arthritis is an incurable, systemic autoimmune disease, though it can be managed and even put into remission with proper treatment. Remission means having low to no disease activity for a sustained period, but it’s not the same as being cured. Even patients in remission can experience flares and may still need medications to maintain that state.
The Inaccuracy of Online Information
Not everything you find on the internet is reliable, especially when it comes to health information. It’s important to keep this in mind as you research. Finding trustworthy sources takes time and experience, so don’t feel discouraged if it doesn’t happen right away.
In my experience, the best resources come from reputable organizations, research institutes, or patients who are actively involved in research or advocacy. I tend to follow patient influencers who participate in these areas because they often get their information directly from credible sources.
Beware of Predators Selling False Hope and Healing
Be cautious of anyone trying to sell you something with claims that seem too good to be true. If they promise a cure or healing, they’re likely preying on your vulnerabilities. While it’s perfectly okay to pay for programs online that help you manage your illness, any promise of a cure is likely too good to be true.
A few of the RA programs by patients for patients that I turn to:
How To Spot Misinformation Online
Spotting misinformation about RA (or any health condition) online requires a critical eye and some careful thinking. Here are a few tips to help you spot unreliable sources.
- Check the source. Reputable medical websites, such as those ending in .gov, .edu, or .org, or associated with renowned health organizations, tend to be more reliable.
- Watch out for sensationalism. Be wary of headlines or articles that promise miraculous cures or treatments. Are they also trying to sell you something?
- Cross-check information. Always verify the information across multiple trusted sources to ensure consistency.
- Look for citations. Reliable articles often reference scientific studies and provide citations, which you can verify in peer-reviewed journals.
- Consult your health care provider. Before making any decisions based on what you find online, it’s always best to speak with your doctor.
Follow The Research
These are my go-to sites for information about living with rheumatoid arthritis.
Posting Online About Our Health Journeys
Social media can be a valuable tool when living with a chronic illness. It allows you to connect with others who share your condition, learn more about your illness, and discover helpful resources. However, it also has downsides — misinformation, snake oil salespeople, and judgmental comments are all too common.
When seeking advice online, particularly about medication, remember that those who are struggling the most often respond the quickest. Think about what you do when you aren’t feeling well — do you lay down and sift through social media? I know I’m guilty of it. On the flip side, those who have found success with their treatments may not be as active online because they’re busy living their lives. Keep this in mind when you’re asking questions in groups or forums.
Some people might criticize you for taking medication or accuse you of complaining about your illness. For instance, when I posted about the COVID-19 vaccines and mandates as someone who is immunocompromised, I received comments telling me to drink bleach or I’m weak and should die. It is important not to take those comments to heart — people who lash out like that are likely struggling with their own issues.
Additionally, bots are often triggered by specific words or hashtags, commenting as if they were real people who claim to have found a cure for their chronic illness by some doctor or natural ingredients. As an online advocate, it is frustrating to deal with these bot comments regularly.
Not everyone feels comfortable sharing about their chronic illness on personal pages, and that’s perfectly fine. Some prefer private groups where they can talk with other patients worldwide. A good way to spot a trustworthy group online is by checking the group rules and if it is regularly monitored.
Here are some great groups and advice on how to find one for your location:
The Arthritic Rule of Thumb
I’ve learned that what works for one person may not work for another, which can be hard for those without a chronic illness to understand. They might think there’s a one-size-fits-all solution or believe in misleading claims like “curing” arthritis with diet or turmeric. Some of these suggestions can even be harmful.
Sharing online can also bring negative comments, especially when it comes to topics like vaccines or medications. I’ve been criticized for my treatment choices and told horror stories about side effects. While it’s important to share our experiences, we also need to be mindful of those who are newly diagnosed and just starting to find their way.
Rheumatoid arthritis looks different for everyone. Even though we share the same disease, each of our journeys may differ depending on factors like the type of RA (seronegative or seropositive), disease severity (mild, moderate, or severe), comorbidities, genetics, socioeconomic status, location, insurance, and diagnosis timeline. The key is to never compare your RA to someone else’s. The best thing we can do is support and uplift each other, recognizing that the journey to find what works is unique for every individual.
Social Media Dynamics
Posting about chronic illness on social media often resonates most with those who share similar experiences. While the chronic illness community provides strong support, there’s also a natural desire for broader acceptance and inclusion.
Balancing self-advocacy and building connections with others, all while managing the challenges of chronic illness, is an ongoing journey. Social media can be a powerful tool, but it’s essential to navigate it mindfully and exercise discernment when engaging with both the information and the people you encounter.
Check Out Remission Possible
Our Remission Possible podcast is dedicated to guiding and supporting you on your mission to take back your life and control symptoms. In each episode, we’ll share inspiring stories from patients who are succeeding in their mission and discuss how patients and doctors can work together to better understand the optimal course of treatment for different chronic conditions while keeping personal goals and lifestyle choices in mind. Listen now.
