Fortune Favors the Bold, Unless if You Have Chronic Illness, Then It All Sort of Cancels Out

Confessions from my past life in Big Tech

The rooftop of Facebook’s Building 20, which was under construction during my time there. From Forell/Elsesser.

One of the greatest shocks of childhood is discovering that your parents were once your age. It’s difficult to imagine them as anything other than your parents and their lives involving dreams and goals other than the raising of you. 

As a disabled person, I’ve been on the receiving end of similarly shocked looks when people realize that I haven’t always been disabled. My chronic migraines began when I was 27. So not only did I used to work, I used to work for the biggest social network in the world.

I joined Facebook straight out of college, shortly after the company acquired Instagram for the recording-breaking price of $1 billion in 2012. While schemes for world domination were clearly in the works by then—from where I sat at the Silicon Valley headquarters, I could look out the window and see full-grown trees being placed by cranes onto the company’s first rooftop garden—compared to the AI-crazed mega-monster it is today (with historic new hire compensation packages), Facebook was still a cute little app. Their campus was still less than ten buildings (it is now over 30), and their CEO still looked like an ad for gray Hanes Beefy-T’s. 

After a few weeks of Facebook’s new hire “bootcamp,” I joined an infrastructure team that focused on making data centers resilient to things like power failures and natural disasters. I had no idea what this entailed, but it sounded cool. On my first official day on my team, as I settled into my very first desk, I noticed a poster, printed in all-caps with orange block letters, on a nearby wall. It read, Be Bold—one of Facebook’s primary mantras, second only to Move Fast and Break Things. 

As a 21-year-old new grad who barely passed many of my computer science courses, not to mention my new team’s first female employee, I didn’t feel very bold. But my manager believed that boldness was a skill that could be learned, and he made me speak up in meetings and work with engineers twice my age until I learned it. Slowly but surely, boldness seeped into my bones. By the end of my third year at Facebook, I was a senior engineer who had forced my way onto a high-priority project, a coveted presenter and mentor, and no longer the only woman on the team. 

Then I got migraines, left Facebook, and ended up in a career that paid negative money, had no free snacks, and didn’t seem to value boldness. 

Anyone who has ever visited a doctor’s office can attest: the Western medical establishment is designed for passive patients. Those who want to participate in their own care simply don’t fit into the confines of fifteen minute appointments, one-size-fits-all doctors, and endless medical bureaucracy. So for someone like me who is accustomed to speaking her mind and generally getting things done, most medical “processes” are bewildering to the point of frustration. 

Take, for example, the process of getting into a headache specialty clinic when I first got sick. It took two months just for me to be added to the waitlist, because every referral I had sent to the clinic was swiftly and mysteriously closed. The reason? I had a prescription for opioids, because they were the only thing my primary care provider could give me that worked against my debilitating headaches, and the clinic was part of a federally-funded hospital that refused to see patients who took opioids. So, until my situation improved enough for me to get off opioids, I was to be denied entrance into the very clinic that would, assumedly, provide me with a safe and effective alternative to opioids. 

But the clinic told me none of this, not even when I asked for an explanation. In the end, I got onto the clinic’s waitlist by finding a doctor who guessed what the problem was, then pulled a few strings behind the scenes.

Situations like these are difficult to navigate, especially when you’re sick and/or in pain. So when it comes to medical self-advocacy, I am not always as bold as I’d like to be. But whenever I can muster it, my boldness proves to be, time and again, my most transferable Facebook-acquired skill. (My skills in data center architecture have, oddly, proved far less useful.)

DHE is both a migraine drug that, despite being a cousin of LSD, causes no fun hallucinations. Instead, it causes nausea, muscle aches, dizziness, and a variety of other gross side effects. So it is only people with nasty headaches (such as myself) who are willing to be admitted to the hospital to receive three infusions of DHE per day over four days—that infusion schedule is called the Raskin Protocol. 

DHE is delivered through a special type of IV that goes very deep in the arm and is notoriously difficult to insert properly on the first try—especially at an understaffed, urban hospital that only has one nurse who is trained on them—making someone like myself, who gets dizzy at the mere thought of blood, likely to faint. And, during the four days of treatment, you’re not allowed to shower, wash your hair, walk around, go outside, or go to the bathroom by yourself. Also, if the hospital notes your dietary restrictions incorrectly, you are relegated to chicken broth for the entire week. Ask me how I know.

After my first two rounds of DHE, I asked my neurologist, half joking, if I could do DHE differently next time. Dr. Raskin was a smart man, I assumed, and he was also the founder of the headache clinic I’d fought so hard to get into in San Francisco. And yet both of the weeks I’d done DHE treatments had left my body feeling battered for months, and I was dreading the possibility of needing to do them again.

“What would you change?” my neurologist replied. She’d assumed I was serious. So I thought back to the Be Bold poster by my desk at Facebook HQ, took a deep breath, and began listing my demands.

People often ask me if I miss working for Facebook. The short answer is no, as only after leaving tech did I come to realize how little I enjoyed most of the day-to-day tasks. But there is a longer answer to this question. Because while I do not miss running load tests on data centers or troubleshooting why an Instagram influencer’s message inbox is broken (I spent my last year there working for Instagram), my stint in the software engineering world did give me what I needed to negotiate for a less taxing DHE infusion schedule, a nurse who gave me Ativan before getting my IV in on the first try, permission to use a portable stationary bike in the hospital, an Apple TV in my room, and the procurement of a mini fridge to keep Natalie-safe snacks nearby. In hindsight, I also should have also asked for a microwave.

I was the first person my neurologist knew of who had customized a hospital stay so extensively, and I was glad I did. Doing so taught me that, despite having a body that so often spins out of control, control over my medical care—and my mental and emotional health along with it—is there for the taking. And no matter how oppressive the medical system feels, there is space for our humanity within it.

So remember, if you ever find yourself hospitalized for headaches—which I hope you never do—ask for the Mead Protocol. 🧠

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