The Story

In 2013, I unknowingly acquired Myalgic Encephalomyelitis or "Chronic Fatigue Syndrome" (ME/CFS). The onset was gradual, and no one knew what was happening.

The act of thinking became difficult; I would stare at work emails until my head filled with white noise. I found myself stopping to catch my breath while climbing the stairs. I tried to work out a little, but the following day I'd be unable to get out of bed, feeling sore and achey as though I had the flu.

My condition continued to decline. I resigned from the Washington Post, and began working part-time. I stopped that and went freelance. Eventually, I couldn't work at all.

I saw sleep doctors and learned I had sleep apnea and idiopathic hypersomnia (daytime drowsiness that doesn't improve with sleep). I've likely always had these conditions. They gave me stimulants and told me to push through my tiredness. My body seemed to balk at the idea, but I didn't know what else to do. Shortly after figuring out I had ME/CFS in late 2017, I managed to push my health right off a cliff.

I abruptly became (mostly) bedbound and began getting migraines. Light & sound were unbearable. Reading & writing became impossible. Screens immediately provoked migraines. Everything seemed to break me. 2018 was dark.

I've made small improvements since then, but the disease is still quite severe. I get migraines constantly. I haven't seen a sunset since 2017.

ME/CFS is a lot like post-concussion syndrome. It sets limits. If you push past your limits, you "crash" and get a painful flare up of flu-like symptoms that can last for days. This is called Post-Exertional Malaise (PEM); it can occur days after whatever triggered it, and it's a primary feature of ME/CFS. If you push and crash often, your illness gets worse. I spent about five years pushing and crashing, which led to my current, severe condition.

Some of my symptoms:

I'm currently working with an ME/CFS specialist, as well as several neurologists. I have a good team of doctors, but there is no cure. I've tried many treatments, and there are always more to try, but full recovery is rare. I'm doing my best to live within very tight limitations.

If you'd like occasional updates about my health, you can follow me on Patreon. Skip the subscribe options, hit Follow, and every month or two you'll get a message from me in your inbox.


Resources

Want to learn more? There's a lot of misinformation out there; here are some sources that I find helpful:

Quick Facts from #MEAction

Unrest: an accurate and compelling Emmy-nominated documentary about the disease; this is honestly the best place to begin.

Do I Have CFS?

CFS Self-Help: Advice on managing activity levels to minimize symptoms, also known as pacing

Health Rising: the latest ME/CFS related news

Open Medicine Foundation: cutting edge ME/CFS research

MEpedia: a patient-run resource

Phoenix Rising: smart & deep patient forums

r/CFS: quick, newbie-friendly discussions & chats

Clinician Coalition: information for healthcare providers, including free CME credits

Donate to #MEAction in my name