How I Accidentally Created a Cult

I accidentally created a cult.

As a cult survivor, this was never a goal I had in mind.

But what are the ingredients for a cult? Vulnerable people plus a cult leader who sells people on hope.

How This Started

The origin story begins on TikTok where passive users of the site engage in escapism and are fed content that provides them with immediate gratification without any work.

As a former educator, my goal was always to educate other spinal leak patients on the corruption going on so that they could avoid pitfalls that led to further harm when seeking care--pitfalls that I'd fallen into. My goal was to ultimately improve access to spinal leak care across the US through physician competence and patient education.

I read countless research articles, talked at length with thousands of patients to note trends in what worked and what didn't work, emailed thousands of doctors across specialties, reviewed the curriculum and the assessment materials for interventional spine doctors, worked with residents to better understand what they are being taught currently, and discussed the healthcare education gaps with professors of medicine at large universities.

Reporting back on my findings in short-video form, I accidentally associated my image with hope in a passive community of followers that I had accumulated.

I remember the first time a patient commented on one of my videos that she checked in every day to see if I was still there as their "cult leader." I jokingly brushed off this comment.

Providing Individualized Support

The requests came in every day from patients who had been denied care and told they were crazy. They would ask for me to look over their cases, and I would provide some suggestions as far as how best to build their case with their physicians to be evaluated for a spinal leak.

Noting how many physicians had asked me obviously leading questions and had poor interviewing skills, I pulled from the qualitative research skills I had developed as a PhD candidate and interviewed the patients to better understand their stories and to help them better understand their stories.

I heard these women's stories about life-impacting car crashes, about the positional headaches afterward, about the hormonal acne and lactating that started afterward. Their physicians had never taken the time to understand their story, and so I helped these women put together a timeline and only emphasize the symptoms that physicians know are associated with spinal leaks. One thing I encouraged the residents to do in my webinar is to always, always ask patients if they have a headache when assessing them for a leak. Many patients are far more distressed about the many other symptoms of a likely leak that they are experiencing--symptoms that are published on in literature but that physicians do not read--that these patients will fail to tell their physicians about the positional headache.

After my interviewing them and coaching them on how to write out the timeline of events, the patients always responded in confusion. "Why are you more helpful than the 10 neurologists I've seen so far?" "Why did no doctor ever ask me this?"

As a spinal leak patient myself, I knew the answer. I challenged my past neurologist to work with me instead of against me. I had been through a slew of physicians and the common theme was that they often did not strive to build a strong case in their notes to support my access to care. Instead, they flailed in their incompetence on the common medical injury of a spinal CSF leak and its systemic symptoms and wrote off-topic, meandering notes. For one friend with a leak, her neurologist simply lists which shows she's watched on Netflix and how this is potentially indicative of her mood--her mood that is causing her problems.

I have hundreds of pages of my own medical records that I use as scratch paper because they are worthless. Three pages on how I should stop eating chocolate and that will solve all of my problems. Two pages on how I'm just a hysterical woman the day after a lumbar puncture. Comments on my uterus by a neurologist. (Umm, wrong body part?) None of this is usable, and yet, I paid dearly for these consultations.

Physicians must approach patient cases from the perspectives of researcher, attorney, and engineer. They must research the issue and interview the patient. They must put together a solid case as they advocate for the patient to be evaluated and to receive care. They must strive to create a solution.

My Cult Following

I soon learned that my following went far beyond my TikTok following. Many spinal leak patients did not have TikTok and were sharing links to my videos to view from their browser.

Initially, I dealt first with members of the cultish Facebook groups in spinal leaks who had long upheld the handful of self-proclaimed experts who had a history of patient abuse, denying care based on race, taking bribes for diagnoses, letting residents perform spinal surgery unsupervised, and gatekeeping the growing epidemic of spinal leaks to line their own pockets. These members were involved in the spinal CSF leak non-profit that encourages patients to fundraise to raise awareness on spinal leaks as the non-profit members align themselves with the abusive self-proclaimed experts and manage multiple patient forums to delete the reports of abuse coming out of each spinal CSF leak center.

In my TikTok videos, I was raising awareness about what really was happening at these spinal leak centers that too many patients were scared to say publicly. And I was doing so on a platform where these non-profit members could not take down my videos and stop my voice. I saw them sharing my videos and trying to follow me. They would pop up on my videos where I explained how I felt close to death at certain times and mocked my pain because I hadn't been "confirmed" by an expert.

After I posted their IRS documents on TikTok, they finally left me alone.

And then the next wave began...

The patients themselves were coming in from every avenue. I was having brain MRIs sent to my Instagram and Facebook Messenger. People saw me talk about spinal leaks on LinkedIn and popped up in my messages asking questions. I would help them organize their case, give them resources, and give them a physician's email address for a physician most appropriate to their case based on my discussions with patients who had had actual success stories. (There unfortunately are many patients who lie about the experts making them better because they are too ashamed in the culty groups to admit that they were scammed.)

But the most overwhelming audience was my TikTok following. They constantly requested individualized help from me but would not lift a finger to participate in making a change themselves such as simply signing a petition or emailing legislators as I organized initiatives.

"We think you're uniquely qualified to do this on your own," one TikTok follower told me. "I'm not smart enough to do this; you are." I had told my following repeatedly that I did not accept statements like these as compliments. They clearly had a device that allowed them access to the internet and the ability to type words. They were just as qualified as I was to make change happen for their own benefit instead of relying on me.

I pushed and prodded them to participate in initiatives that would benefit all of us only to be met with radio silence.

Finding myself growing resentful, I took a break from TikTok. Between the endless requests for help from women and the angry responses from men that I wasn't telling them a solution but just exposing corruption, I was becoming overwhelmed.

I had also noticed a strange trend that felt overwhelming: the passive lookers.

Every day, members of my following would look through my videos. A few messaged me privately that I was the reason they were still alive as suicide is one of the top causes of death with a spinal leak. The torturous symptoms paired with discrimination against leak patients by doctors and the gaps in healthcare education causing physician fear of our patient population is a horrific combination.

Despite my content apparently being meaningful to many patients, they still would not take action in rising up and speaking out so we could make change happen.

It's suffocating to be told constantly that you are the lynchpin keeping thousands of other people alive by your refusal to stop fighting publicly against corruption in healthcare and your commitment to the goal of putting the self-proclaimed experts out of business via the way you know best: creating competition by pushing private practice anesthesiologists to step up.

It's especially suffocating when these other patients see your image as the image of hope into which they escape and refuse to take action on their own. I had accidentally created a dependent monster.

When I finally had enough of being looked at on TikTok, I set up my boundary in a video saying that I was taking a break because my following was overwhelming me.

Shortly after, a friend sent me a screenshot. People had taken a picture of me and posted it in a Facebook group, saying that I had announced I was taking a mental health break from TikTok and that they were trying to track me down because they found my content to be the most helpful they had come across for spinal leaks. At first glance, this might seem like a compliment. However, I had set up a boundary and I had also left all of my educational resources open to the public in video format on my account. What was at the root of this situation is these people wanted access to me as a source of hope instead of creating their own hope using the resources I provided.

When I returned to TikTok to call out this behavior, an older man who had sent me messages before saying he was scared to lose me was one of the first to view my videos. He always was one of the first. Rain or shine, night or day, a week later, or a day later, he constantly checked my profile and was one of the first to view my videos--never liking my videos as he seemed to believe he was in stealth mode. If I took a break, he immediately hopped over to my Twitter to see what I was saying there.

I started to feel creeped out by this behavior and blocked him for my own well-being. He immediately popped up on my Twitter and I blocked him there. He quickly made a fake account with the same last name and a different first name and followed me on Twitter. I blocked him again. He used this same fake account on TikTok and requested to follow my private account. I deleted his request.

His messages poured in--one after the other. He pretended to be his brother, advocating as a supposed third party. He proclaimed that his "brother"--my original follower--had been dismissed by physicians as a spinal CSF leak case and I was the sunshine in his brother's life. The messages rambled on, increasing in entitlement. Since his "brother's" physicians had failed him and I made his "brother" feel happy, his "brother" was therefore entitled to access to my person. I must let down my boundaries and let his "brother" in.

Well, that took the situation from annoying to terrifyingly creepy.

The Quality of My Content and Not the Appearance of My Image

In a recent webinar I attended, the host emphasized the importance of personal image. She professed to have contracted past LinkedIn influencers based on their appearance. She encouraged us to work on our personal image and to build our brand around this.

As a marketing professional, I highly disagree. Brand consistency and brand toolkits are important for brand recognition. But to build a brand around your personal image often equates to building a superficial, cult-like following that associates your image with feelings such as immediate gratification.

In one great video I watched on YouTube, a life coach explained how many more likes she got when posting a great photo of her versus posting educational content about her business. It's easy to fall into this trap. Instead, she recognized that the people who liked the photos of her were not her customers. She recognized that she needed to develop resilience and not seek external self-validation in the much more arduous task of building a following around her educational content without her image--and she succeeded through immense determination.

In fact, if you build a following around your personal image, you may--as I inadvertently experienced--build a cult of hope around your image. It was me on video each time on TikTok giving people updates on the progress I was making, explaining the data behind spinal leaks--the data that pointed to hope while doctors gaslighted patients into hopelessness by making unsupported claims not backed by science.

I found that my TikTok followers hated reading the content I put together. They didn't like interacting with me on Twitter because the tweets were my words but these followers did not get to see my image. Many of them had associated my image with hope in their minds.

These TikTok followers would become incensed whenever I dared to remove access to myself and my image. These followers felt entitled to view me as viewing me brought them "happiness" and "hope" (in their own words).

As a logical person, their obsession with my image was confusing. I find hope in action--particularly acting to get my brain buoyant again. I was giving them resources and guides and they were not acting. Yet they found hope in simply looking at me? I felt like an exhibition that was producing educational content in vain if they weren't going to use it.

It became too much.

"Did I become Jesus?" I asked my dad. "What are they realistically expecting here? I'm not some healer."

"Imagine how Jesus felt," my dad remarked. "He shows up to a party and they're already ready with the requests: 'hey, can you turn this water into wine?' Jesus is probably upset that he can't catch a break. They fixate on him as a healer and try to follow him everywhere."

"Well, at least, he had supernatural powers," I said. "It was a little more feasible for him. I'm 100 percent human." But I did reflect on a Boundaries class I took once how we explored how even Jesus had to rest and take breaks from his followers.

I shut down my TikTok. Some of them are still out there looking for me, taking more action to find a way to access me than they ever did to use the resources I provided to join in on initiatives that would help everyone access healthcare.

What I Learned from My Experience

Through my accidental creation of a cult of hope around my own image by passive followers, I learned to set better boundaries.

I learned that using video format with me speaking to share information could cause an obsession with my image by passive people. Instead, distancing myself from the content I created allowed me to set a much healthier boundary. I created written content to share and a screen recording of a presentation I put together that reviewed personal experiences and the literature on best practices.

This approach weeded out the people who were oddly fixated on viewing me and instead attracted people who were interested in learning more about spinal leaks so that they could then go advocate for themselves for better spinal leak care.

I began charging for the educational materials I put together that reviewed the literature and for my time in helping patients write up information on their cases to better be able to access care.

The audience I attracted through using lead magnets without my face was more willing to pay to be trained on how to better advocate for effective spinal leak care with their physicians. They valued the content I produced and became prepared warriors for facing healthcare access issues due to physician failure to self-educate.

In contrast, the audience I attracted when creating videos of me sharing updates was an obsessive, passive audience unwilling to put down a dime or lift a finger in their own self-interest, expecting me to both cheer them up through my presence and to bring them change.

They still are selfishly consuming my energy--detracting from the cause I am involved in to make a change for millions--as they continue to cyberstalk me, angry and entitled, demanding that I give myself back to them.

If I ever accidentally create a cult again, I hope I manage to create a cult of change and not a cult of me.

#HealthcareAccess #PersonalImage #Marketing