As the founder of the very first website built on IC, as well as the very first forum (the ICN Support Forum), I have strong thoughts on the state of IC support online today. In the earliest days, we viewed the internet as a marvelous way of bringing the world’s best resources directly into the homes of patients in need, particularly those who didn’t have access to health care providers. And, for many years, websites worked beautifully. When AOL, Compuserve and, eventually Facebook, were launched, it was exciting. Family members and friends connected more easily. Many new IC support groups emerged as well, but they shared a common flaw – conflict, infighting, and misinformation.
What we didn’t know back then, but see so clearly now, is that social media platforms actively use addiction principles to make billions. How? Notifications, likes, and comments trigger a dopamine hit, and that dopamine hit trains the brain to look for more, and more, and more. You can see it everywhere now — people walking through their lives glued to a screen rather than engaging with their families, communities, and environment.
They prioritize shiny, happy videos, such as puppies, dancing, and things that make you laugh. But underneath that, they also promote conflict. Hateful content keeps users scrolling. Bullying and conflict are also amplified.
Thus, when health groups appeared on Facebook, they were mired in a platform that encouraged conflict. That fighting eventually moved into many, if not most, online IC groups. Despite the best of intentions of the group leader, conflicts were rampant. Some of those group leaders were their own worst enemies. They had agendas. One, for example, kicked out any patient who talked about conventional medicines because they believed that natural medicine should only be used. Another kicked out men because the leader believed that only women could have IC.
Doctors who visited various Facebook groups were horrified by what they were reading. They called it the Wild West, and for good reason — the fighting and misinformation were doing far more damage than good. It’s gotten much worse over time.
The Algorithm Doesn’t Know the Difference Between Good Advice and Dangerous Advice
Here is the part that concerns me most as someone who has spent decades trying to get accurate IC information into patients’ hands: social media platforms have no mechanism, and frankly no incentive, to distinguish between a urologist explaining evidence-based treatment and a sales rep insisting that everyone’s IC will disappear if they start drinking a particular tea or follow a specific diet. The algorithm doesn’t reward accuracy. It rewards engagement. A confident, dramatic claim (“I cured my IC and doctors don’t want you to know this”) will always outperform a measured, honest one (“this may help some patients depending on their phenotype, and here’s how to figure out if it applies to you”), because confidence and drama keep people watching, commenting, and sharing. Nuance does not go viral.
I watched this happen in real time in groups I used to be part of. A patient would post a genuinely useful, carefully worded explanation of, say, why antibiotics aren’t appropriate for every IC patient, and it would get a handful of likes. Then someone else would post “I healed my bladder, ask me how!” and it would explode with hundreds of comments, shares, and desperate patients messaging them for details. The platform’s design didn’t just fail to correct that imbalance. It actively created it.
Influencers Discovered a Market, and Patients Paid the Price
Somewhere along the way, chronic illness became content. I don’t say that to be cynical about every person who shares their health journey online — many do it with good intentions, and some are genuinely well-informed. But the platforms turned health struggles into a business model, and that changed the incentives for everyone in the space, including the platform, businesses, influencers, organizations and so forth.
Someone who says “here’s what worked for me, and it might not work for you, and please talk to your doctor” gets far less traction than one who says “this is the answer nobody is telling you.” This is not a minor cultural quirk. For a disease like IC, where treatment genuinely does depend on phenotype — where what helps one patient can do nothing, or even harm, another — an information ecosystem that rewards the loudest voice over the most accurate one is actively dangerous.
What We Lost When Forums Became Feeds
I think often about the difference between the community we built and the ones that replaced it, and I don’t think the difference was accidental. Our forum had structure. It had moderators — real patients who volunteered their time, who knew the difference between sharing an experience and giving dangerous advice, and who were trained to step in before disagreements turned into pile-ons. It had rules that applied to everyone, including group leaders. And critically, it had no algorithm deciding which posts patients saw first based on what would keep them clicking. People saw threads in an order that made sense, not an order optimized for outrage.
Social media IC support groups, by contrast, inherited all of the platform’s underlying incentives whether the group leader wanted them to or not. Even a well-meaning moderator was fighting a design built to surface the most emotionally provocative content, buried in a feed the moderator didn’t control, on a platform where a blocked user could simply create a new account and return. Add in leaders who used their moderator power to enforce personal beliefs — banning anyone who mentioned conventional medication, or anyone who didn’t fit their idea of who “gets” IC — and you end up with fractured, hostile splinter groups instead of the kind of steady, patient, well-moderated community that chronic illness support actually requires.
Why This Matters More for Health Than for Almost Anything Else
Social media’s toxicity is a widely discussed problem in general terms, but I want to be specific about why it’s especially dangerous in the context of health and IC education. When the subject is a movie or a sports team, bad information and hostile arguments are unpleasant but low-stakes. When the subject is what to put in your body, what treatments to pursue, or what to say to your doctor, bad information and a hostile environment can lead to patients delaying appropriate care, patients spending scarce money and hope on unproven protocols, patients absorbing false certainty about their diagnosis from a stranger, and patients getting driven out of the very communities that were supposed to support them because they didn’t hold the “approved” opinion.
I’ve seen newly diagnosed patients, frightened and searching for answers at 2 a.m., land in Facebook, Reddit or Inspire IC groups and walk away more confused and more scared than before they joined — not because the information they needed didn’t exist, but because it was buried under conflicting claims, personal agendas, and outright hostility.
TikTok, Funny Videos, and the Danger of Mistaking Entertainment for Medical Advice
Today, patients are increasingly turning to TikTok not just for community or a laugh, but as an actual source of medical guidance. I hear it constantly — “I saw on TikTok that…” has become as common an opening as “my doctor said,” and often it’s said with the same weight, even though the two things could not be more different in reliability. TikTok’s format is built around short, entertaining videos, perfect for a joke about frantically searching for a bathroom. Humor has always had a place in chronic illness communities, and I understand exactly why patients gravitate toward content that makes them laugh instead of cry.
But a thirty-second video, however funny and relatable, simply cannot contain enough information for anyone to make an informed health decision. IC is not a single disease with a single answer. Whether a treatment or diet recommendations are appropriate depends on phenotype — whether there’s bladder-wall pathology like Hunner’s lesions, whether pelvic floor dysfunction is present or whether central sensitization is driving symptoms. None of that nuance fits into a format designed to be consumed in less time than it takes to read this paragraph. A creator would need several minutes at minimum just to lay out the right questions to ask, let alone the answers, and TikTok’s format actively discourages that kind of length because shorter videos perform better and reach more people. We created our free IC101 Master Class video series to fill that need.
This means patients making decisions based on TikTok are, by the very nature of the format, making decisions based on the worst and most incomplete information — no matter how sincere or well-intentioned the creator is. This is exactly why I keep telling patients that finding real answers about IC takes more than a scroll. It means going to sources built specifically to hold the depth of information this condition requires — credible, comprehensive websites like the ICNetwork or ICA, where information on phenotyping, treatment options, and diet is laid out with the room it needs to actually be understood, not condensed into a punchline. A thirty-second video can make you feel less alone for a moment. It cannot replace the sustained, careful reading it takes to understand your own body and your pelvic pain.
What I’d Ask Patients to Consider Instead
I applaud the growing number of patients who have limited social media for their IC information. This doesn’t mean that patients should be alone with their diagnosis, or that peer support doesn’t matter. It matters enormously. I built my entire career on the belief that patients supporting patients is powerful. This is exactly why we do live support group meetings almost every sunday on Facebook. But the platform matters just as much as the intention behind it. I’d encourage anyone looking for IC community and information today to ask a few questions before trusting a source:
- Is this moderated by people trained to catch dangerous advice, or is it an open feed with no real oversight?
- Does this source, video, influencer, friend acknowledge that IC treatment depends on phenotype, or does it offer one answer for everyone?
- Is there a business incentive behind the advice being given — a supplement, a paid program, a monetized following?
- Would this person’s advice survive being said calmly in a doctor’s office, or does it only work because it’s funny, confident and/or dramatic?
The internet’s original promise, for me, was putting the world’s best resources directly into patients’ homes. That promise hasn’t disappeared. But it now requires far more caution and self preservation if you are using social media. If visiting a group makes you feel depressed, angry or frustrated, it’s ok to step away.
Here at the ICN, our goals have never changed. We provide support, education and encouragement. We do our best to provide factual, accurate articles, blogs, videos and live IC support group meetings, all at no cost to you. Thankfully, our members see value in our work! If you like what we do, or if we have supported you, please consider becoming an ICN member today! It helps tremendously.
