Where and how patients communicate with one another is important, and over the last few years, the Social landscape has changed dramatically.

In September of 2019, after working out at the gym, I began to experience severe but intermittent pain in my groin, leg, and lower back. It hurt to sit on hard surfaces and only felt normal while walking. After a few trips to the doctor’s, we confirmed that the condition was not life threatening (meaning not cancer).

I was far from living normally. I nearly cancelled a family trip to Rome in February 2020, and even though I did go, I had to call off activities several times. And like all men in their 30s, my most prized possession on vacation was an inflatable donut … just in case my pain spiked.

Fast forward to March 2020 and I was back from Italy and waiting on a specialist.

Then the world shut down. I was cut off from specialists for about a year.

Stuck, deprioritized by urologists since (rightfully) I didn’t have cancer, I did what most people would do: I Googled. And eventually I began to find online communities that addressed my confusing set of highly variable symptoms.

Ultimately, I ended up splitting time between Twitter and Reddit, connecting with others who had similar symptoms.

While Reddit’s community helped, a great deal of the community’s energy bemoaned the symptoms and lack of resources for men in the pelvic pain space. Venting is an important part of living with health conditions that defy resolution, but the negative outlook simply became too much for me. I still had hope of resolution.

Twitter, in contrast, focused on sharing information related to figuring out the condition, what questions to ask doctors, links to helpful videos to stretch in the case the root cause was nerve entrapment or muscle knots. Occasionally, verified MDs or PTs communicated new research findings, helpful questions to ask your own PCP or specialist, or answered questions outright. Indeed, a Twitter exchange ultimately set me on a journey away from thinking about a long-term entrenched infection that had been suggested on Reddit toward a muscular issue.

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Several things allowed my foray onto Twitter to be successful.

• The platform was stable and consistent, effectively the journal of record for the male pelvic pain community. Reddit, Youtube videos, and other websites all linked back to Twitter.
• The character of the community focused on solutions rather than suffering. Since I had not suffered for long, I was not exhausted by the condition. I was still ready to fight for resolution.
• Higher trust. Unlike most Reddit and Youtube Accounts, which are faceless avatars or screen names, Twitter’s personalization and the Blue Check mark made it easier to connect with experts and influencers. It’s one thing to see “USERNAME” post that we should buy a product on Reddit, but wholly different to see an MD discuss the benefits of an approach and see they are authenticated.  The Blue Check marks, precisely because they were not monetized built trust – a critical component when dealing with your health.

All of that is now out the window.

To illustrate how far the authenticity and connectivity operate, we can pick up the thread on my own exchanges on Twitter. After another pelvic pain sufferer mentioned their symptoms subsided when they took antibiotics, a helpful MD pried for more information. It turns out Doxycycline and Tetracycline, two of the most common antibiotics to treat urogenital infections, have anti-inflammatory properties. If your pain stems from a compressed nerve (as my doctors ultimately found my pain did), then reducing the inflammation around the muscles meant relief.

Following and joining conversation quickly showed me that I wasn’t just going to need a urologist, but potentially a neurologist and most definitely a physical therapist. The problem could be complex and fell at the edges of several specialties. Armed with this information however, I was able to make a quick recovery and barring the normal willpower barriers to working out, I got back in the gym, can again sit on hard seats, and regained my preferred vacation itinerary.

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Today, my pharma ads on X are now ambulance chaser ads.  Unmoderated content, the prevalence of hate speech, and new revenue sharing models have collapsed the desire for any pharma ads to populate the platform.  Doctors, while still sharing, no longer hold the authenticity they once did.  And it’s not just a story that they may choose not to pay for a Blue Check, but rather that others can do so, extend claims on their expertise, and generally muddy the water on who is a subject matter expert. Furthermore, doctors cannot block those harassing them despite a high prevalence of harassment since 2020. Many like me have scaled back their X usage or deleted their account. As a result, the community that helped me a few years ago has frayed, torn, and collapsed.

My ailment was not life threatening. I would not die from it, even though some days it felt like I would. Replete with its new lack of stability, trust, and general loss of users and advertisers, Musk’s X is fracturing these communities and their life-altering exchange of information. These communities will reform or move onto other platforms, but the unique high-trust exchanges between patients, practitioners, and pharma companies are in dire jeopardy. Will the next platforms be as effective at connecting and directing communities? Time will tell, but I have my doubts.

Without Twitter, I’d have been back to doctors searching for answers for a lot longer. Who knows if we would have found the answer.

But I had the time to search for answers. Other patient communities who suffer from more lethal or life altering disorders may not have that time.