Social Media - Virtue or Vice?

Part 1: One woman's journey to heal herself with a digital scrying mirror

I gave up Instagram for Lent.

Actually, I gave up posting on my Instagram stories for Lent.

And it turns out, when I’m not posting my own stories (which easily accounts for 90% of my Instagram usage), I don’t spend endless time scrolling other people’s Instagram stories.

In fact, I don’t find myself on Instagram much at all.

And I’m not the only one.

“My screen time is way down and I have no interest in looking at Instagram anymore,” my husband recently declared, emerging from the bathroom having had nothing good to read on the internet.

There are no shortages of think pieces on the harms of social media, and this will not be another one.

Because social media was actually instrumental in helping me heal myself.

---

I wasn't always chronically online.

I am married, I have two kids, we’ve traveled the world together - and I used to have a job. A very demanding corporate career that had me tied to my work (and my work phone) 24/7.

And then, in the spring of 2020, I found myself at the bottom of a hole.

I got Covid in March 2020. We began quarantining on Friday the 13th and I developed symptoms 10 days later. I spent a week in bed, sick with the worst virus I have ever had, and as I recovered, I developed a bunch of new, weird, debilitating symptoms.

My heart went crazy. I couldn’t walk to my own backyard without stopping to rest multiple times. I was suddenly allergic to everything - food, clothes, even my own thoughts. I was constantly gasping for air. I was falling asleep at all hours of the day, waking up in the middle of the night in a cold sweat. My veins were bulging and spontaneously rupturing like the Hulk, my brain was so scrambled I lost the ability to read, and none of the dozens of doctors I saw had any clue what was going on.

I was suddenly bedridden, facing what I was told was permanent disability, and the entire world was locked down.

I picked up my phone and opened Instagram.

---

A few years earlier, a friend was at our house playing with our new baby.

“Are you guys keeping her offline? I noticed you haven’t posted pictures of her,” he asked.

“Oh, no not necessarily. Honestly I am just so busy with her and work that I barely post on social media anymore,” I responded.

“Have you ever posted a story on Instagram?”

“A what?”

“On Instagram, you can make a post that isn’t on your main page. People only see it if they click on your profile picture. And it disappears after 24 hours so you don’t have to worry about it staying out there.”

“Hmm,” I thought about it for a minute. “It sounds stupid.”

“It’s an easy way to share stuff you don’t want to be permanent.”

So in late 2018, I posted my first Instagram story.

---

A year and half later, as the world descended into pandemonium, I found myself bedridden and endlessly scrolling.

Image after image of people doubling up on masks, spraying lysol on their packages, lab leak theories, people saying goodbye to dying grandparents through walls of cellophane wearing full hazmat suits, cops shutting down beaches and public spaces, outright denial of the existence of a virus, 5G rollout maps, hundreds of dead bees on the street under a new cell phone tower.

And if that wasn’t enough to completely overwhelm the entire nation, the anti-racism movement had simultaneously reached a fever pitch.

Defund the Police, Black Lives Matters, George Floyd, Derek Chauvin, Ahmaud Arbery, Breonna Taylor, “Say Her Name!”

One day I opened Instagram to a series of Black squares.

I switched my phone off and stared into the black mirror in my hand.

The sheer litany of information was too much.

I had been struck idle. I had time to reflect. But most of my peers were still working full time, from home, while suddenly homeschooling their children. There was no possible way they could keep up with the news, let alone make sense of it.

No single person can take in all of this information and process it in order to understand what is currently happening culturally.

If anyone is truly in charge, I realized, they are purposefully overwhelming us with information and distracting us with a multitude of threats.

They want us to descend into chaos.

---

I fell asleep on my 35th birthday to the sounds of helicopters circling my city, ordering us to stay in our homes because a major protest was occuring a mile away.

For months I had sat in stunned silence - a position I had never before experienced.

But the cognitive dissonance was getting to me. It was getting to be too much.

That evening, I posted a video of the police helicopters to my Instagram story. I said we were living in a police state. I compared the loudspeaker from the helicopter to the loudspeakers in Vietnam, where the government makes announcements twice a day from the lampposts lining the streets all over the country.

Within minutes I had a DM in my inbox from a friend I had known since college.

“Excuse me,” it began. “What did you mean by this?”

“We’re living in a police state,” I replied. “These announcements remind me of the government announcements in Vietnam.”

“Well, it seemed racist,” she stated.

I am surprised and confused.

“I’m racist for comparing oppressive governments?” I asked.

“It just *seemed* racist,” she replied.

“Because I referenced an Asian country? Have you ever been to Vietnam?” I asked.

She hadn’t. She stopped replying. She never spoke to me again, in fact.

I was so confused.

It’s now racist to talk about oppressive governments?

The next day I posted footage from the protest of a tall, athletic, white man, dressed head to toe in black, with a crew cut and a black balaclava, take a crow bar to the windows of the shops down Broadway. He ran through the crowd, smashed the windows, then disappeared.

“This dude looks like a fed,” I wrote. “I believe this guy is a fed inciting violence and looting at this protest.”

Within minutes, again, I have a DM in my inbox.

It is the best friend of the anti-racist who has never been to Vietnam.

“I think he’s an ally,” she says, defending a man who, it will turn out, is definitely a fed. “White allies often perform the most violent actions so our black brothers and sisters don’t get arrested.”

By the end of the week, dozens of people from the protests have spoken out about having seen multiple solo actors at the protests and there is widespread speculation that violence and looting was intentionally provoked by outside military or security forces with ulterior motives.

What. Is. Happening.

---

By the summer of 2020, I had begun receiving what I knew would become a litany of diagnoses.

And I knew that receiving a litany of diagnoses after a virus was curious. It was at odds with our cultural understanding of viruses, of autoimmunity - and particularly, of psych disorders.

For the first two months that I suffered with “long Covid” before “long Covid” was a recognized condition, most of the doctors I saw tried to tell me it was just anxiety. During one trip to the ER I was given Ativan, which I’ve taken before with no issue - but this time I suffered an allergic reaction and slept for three days afterwards.

When they put a heart monitor on me, it showed that my heart rate was regularly over 150, even in the middle of the night, and my palpitations were indicative of an actual electrical problem in my heart.

When I was finally diagnosed with Ehlers Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS), I asked “How could I just be getting these diagnoses now? EDS is genetic, I’ve been hypermobile my entire life, and I’ve probably had POTS at least since I was 10. How could these conditions be worsened by a virus?”

The doctors couldn’t answer me.

“Is there anything I can do?” I ask my cardiologist.

Since I can’t take beta blockers she suggests an ablation - a procedure in which they go up into my heart via a catheter and destroy some heart tissue in order to fix the rhythm. She cannot tell me the percentage of people who get better with an ablation.

“You can’t give me a tilt table test and QSART, which is the Standard of Care for properly diagnosing dysautonomia, yet you are jumping to an ablation? I can’t even handle medications that I was able to take previously, how do you think I’m going to handle heart surgery?”

She shrugs.

“Will I get better?” I asked my genetecist.

“We don’t know. About half of people with these conditions seem to find ways to improve,” he responds.

“And the other half? They, what, just get worse until they die?”

He nods, unable or unwilling to offer any further hope or guidance.

---

Something is off. None of this makes sense.

In the span of 3 months, I’ve gone from being told all my symptoms are psychological to being told my diagnoses are severe enough to require heart surgery and/or leave me bedridden until I die.

I take to Instagram.

“I have had an invisible disability for 25 years,” I began. I detailed my recent diagnoses and health saga.

Within minutes, I had comments and DMs from multiple acquaintances.

“My daughter has POTS,” read one from a former coworker.

“I have EDS and POTS, as well as MCAS,” shares an old friend from my church youth group.

“I have EDS and POTS and I’ve been working with Stanford for decades,” read another, from my elementary school friend, Rachel.

‘Jackpot,’ I thought.

I’ve known Rachel since we were kids. She’s had a lot of complex medical issues, and her parents are at least upper middle class in a major metropolitan city with access to some of the best and most knowledgable doctors at world renowned medical centers. I am sure she will be able to help me shortcut to the research that will help me best.

---

“You’re probably going to have to hire help. Most mothers I know with EDS and POTS have to hire someone to help with their children,” Rachel wrote.

Rachel got sick in college. She had to move from the dorms back home to her parent’s house, and she’s been there ever since. She got diagnosed with these “rare” conditions when they were actually considered rare (now it’s believed that 10% of the population has a “rare” condition, most undiagnosed). She’s worked with some of the best doctors at the best hospitals in the United States. She tells me she was even the subject of a research study detailing her unique kidney condition.

And over the course of her lifetime and treatment in these world class medical centers - she has steadily gotten worse.

My conversations with her are distressing.

A diagnosis at 35 is vastly different from a diagnosis at 20.

I don’t have a room back at my parent’s house that I can go live in. I am the parent. There is no way my husband and I can afford to hire in-home care for myself or for our child - I’ve just lost my career and apparently I’m going to be increasingly disabled until I die. We are 2 years into a 30-year mortgage and at the beginning of our professional careers. I have a 1-year-old. I have plans. I have a list of family travel destinations we haven’t even begun to check off - and before I got sick, we had been working on growing our family.

How can I have more children if I can’t get out of bed to take care of them?

---

“Oh, my cousin James called. He saw your post on Facebook and he said his daughter has EDS too. And the other one, what is it, POTS? I think she has that, too. What are the chances?”

My mom has called to pester me with questions about my health I cannot answer, because there are no answers. She believes if I just find the right white coat, the right treatment, I will be saved. My conversations with my parents are exhausting. But I perk up at this mention.

What ARE the chances?

“Wait really? When did she get diagnosed?” I ask.

“When she was a kid. I think she was 14. They took her to the Mayo Clinic and she got diagnosed.”

I sit with the news that a member of my family got these diagnoses over 20 years ago while I’ve been gaslit for decades.

I was very sick in high school. I had a plethora of ailments that were not properly diagnosed, underwent multiple major surgeries (unnecessarily), and had to do an extension program called Home & Hospital. I graduated high school in a wheelchair.

“Why didn’t you take me to the Mayo Clinic for a proper diagnosis when I was 14?” I asked my mom.

“We didn’t know,” she said.

I melt back into the couch.

---

Hi Adrian! 
I saw your post about your health and I wanted to reach out with some information. I have EDS and POTS too, and it’s really common with those to have a third condition called Mast Cell Activation Syndrome (MCAS) that is really unpredictable, hard to manage, and most doctors don’t know about it. It can be scary. You may want to look into it, and feel free to reach out to me if you want to discuss it.
Hannah

I get a message from yet another friend from childhood, alerting me to a new condition I might have - Mast Cell Activation Syndrome. We start discussing her experience with it.

I got diagnosed with EDS and POTS at my own insistence. With very little information from doctors, I researched my symptoms, found the conditions, and learned that I met the diagnostic criteria - and had for most of my life. I demanded an appointment with a geneticist. I was evaluated by three separate doctors to get an EDS diagnosis. I also demanded a cardiologist evaluation for POTS. I gave myself a poor-man’s tilt table test in my most recent visit to the ER - while hooked up to the monitors, I moved from laying down to standing up and I watched my heart rate and blood pressure skyrocket. The machines went crazy beeping and several nurses rushed in. I told them this was a diagnostic indicator for POTS, chastised them for assuming a 30-something woman’s heart condition was just anxiety, and demanded they forward the results to my cardiologist. At our next appointment, my cardiologist added POTS to my chart and offered me an ablation.

I search for MCAS and the first thing I find is a Psychology Today article from 2019.

Mast Cell Activation Syndrome: An Alert to Psychologists

“Mast Cell Activation Syndrome can present as depression, anxiety, or brain fog,” the byline reads.

As I read through the article and go down the list of symptoms, I start getting chills.

Anxiety and depression; severe pain anywhere in the body; unusual neurological symptoms; headaches; sensitivity to a wide array of stimuli including foods, chemicals, light, and sound.

My heart starts racing and I hear a high pitched ringing in my ears. MCAS encompasses every “mystery” symptom I’ve ever had in my life. I keep reading.

Insomnia; swollen glands; chronic debilitating fatigue; cognitive difficulties and dysfunction; digestive disorders; interstitial cystitis; rashes; shortness of breath; ringing in the ears.

The validation of reading this article floods my body with cortisol and activates my very damaged mast cells to degranulate, releasing histamine and a bevy of other inflammatory cytokines, which triggers a surge of adrenaline.

I am elated.

I figured it out!

---

The next day, we have my daughter’s 2-year check-up appointment with her pediatrician, Dr. Bennett, over zoom, because it is summer 2020.

I love my daughter’s pediatrician.

We haven’t seen her since January so I am catching her up on our experience with Covid, and especially my daughter’s unexplained symptoms.

“She barely got sick when we had it, she just seemed like she had a cold. But since then, she’s had some weird rashes on her face and her back, and now the bottoms of her feet are peeling. She also seems to have some new food allergies, but I can’t figure out which foods are bothering her. And she has some odd new psych symptoms. A friend mentioned we might have MCAS and I was reading an article about it last night. It does seem to explain what I’m dealing with, but I don’t know which of my doctors to ask because it seems like no one knows about this, and honestly they are all so confused by my symptoms.”

“You think you have MCAS?” Dr. Bennett asks.

“Yes,” I answer. For a moment, I’m afraid she’s going to tell me to stop googling my symptoms. “Have you heard of it?”

“Yes, I have two other patients who have developed MCAS. Can I prescribe you something for that? Is that ok? I know I’m not your doctor, and I really don’t know the condition well at all, but I do know it can get very scary, very fast,” Dr. Bennett offers.

“Of course!” I am thrilled that she knows what MCAS is and knows what to prescribe.

“I’m going to prescribe you Cromolyn. This is the oral version, these are little ampules that you break open and drink in a glass of water. You can also buy a nasal spray called Nasalcrom, over the counter. It’s marketed as an antihistamine but both of these are mast cell stabilizers. They help stop mast cells from degranulating and release histamine. You can also look into anti-histamines and try different ones, but what you really want to do is stabilize the mast cells before they release histamine. Once the horses are out of the stable, it’s really hard to get them back in, so to speak,” Dr. Bennett explains.

“Wow,” I say, thrilled that I’m finally getting somewhere. “Thank you so much. Can I give this to Maxie?” I ask.

“Well,” she hesitates. “It’s not FDA approved for children. Unfortunately, there are no FDA approved treatments for MCAS in children, so I can’t give you anything for her. But there are several children’s antihistamines that can help. I would really encourage you to keep looking into MCAS because it’s new and most of us really don’t know anything about it.”

“I’m really concerned about Maxie’s psych symptoms especially. All of a sudden, she’s developed light and sound sensitivity and symptoms of OCD. Right after having a virus. Do you guys know about this connection? That viruses cause psych symptoms? Because that leads me to a lot more questions. You know, there are viruses in vaccines. And then when I try to research all of this it’s like - Jenny McCarthy?! What are you doing here?” I laugh, gauging Dr. Bennett’s response on the screen.

“Well…” she hesitates. She doesn’t laugh. “I would encourage you to keep researching.”

My heart drops.

Did she just acknowledge that there is a connection between viruses, vaccines, and psych symptoms?

The ringing in my ears is a freight train.

“If you have the means,” she continues, “I’d encourage you to seek out Functional Medicine. There are some really good doctors in San Francisco who understand this stuff, but the visits can be steep and are often not covered by insurance. But they take into account a person’s full history and look into the root causes of illness, including genetics, nutrition, toxins, stress. We had a seminar on Functional Medicine in one of my med school classes and it was fascinating, but the appointments are so long it doesn’t fit into the insurance model, so it’s not accessible to everyone.”

The walls around my understandings of biology start to crumble. I have a Bachelor’s Degree in Psychology, and almost everything we were taught was wrong. We are at the outset of a pandemic and the entire medical system is a house of cards set upon biological fabrications designed to entrap you and extract your hope, your money, and what remains of your health.

If you have the means.

---

I’d had my health stripped away from me, the career I had spent more than a decade building pulled like a rug out from under me, my family growth halted, and I was being told I was facing uncertain death.

Maybe.

Fifty-fifty chance, according to the American Medical System.

If you have the means.

I knew that if I continued taking my health into my own hands, I would be making a clear departure from safety of the community I had known my entire life. I knew that if I chose to keep pulling at threads, I would continue to uncover uncomfortable truths that would cause people to drop out of my life.

If you have the means.

And I knew that the alternative was to drift along through the medical system, waiting for a savior, utilizing “treatments” that would likely make me keep getting worse until I die.

If you have the means.

It wasn’t a long deliberation. I am a very confident person who trusts wholeheartedly in the validity of my intellect and ability to think critically. But it was still a difficult decision.

I opened my computer and I cleared all my tabs.

I have the means.