Which chronically ill person has not heard this, or received it as a comment on social media?
You post a 280-character text on social media, and someone comments: “You can be online, so you can work from home!”
When I first got sick, I thought that too. Stephen Hawking was severely disabled and worked all his life. How hard could it be to do a bit of physics from bed? At that point, I already had severe POTS, though I did not yet have a diagnosis, and I was already spending 20 hours per day lying down.
It was early 2022, so my employer did not mind that I worked from home — or rather, from bed — and I was not lecturing that semester. That made things easier. Every morning, I put my laptop on my stomach and worked on a grant proposal because I expected to be fully recovered by the time the grants were announced.
And I continued to decline. What I did not realize at the time was that, for people with myalgic encephalomyelitis, cognitive exertion can be just as bad as physical exertion, or worse. My internalized ableism harmed me.
Besides, that 280-character post? It may have been written over many hours, with lots of breaks in between. And it was written when the person who wrote it was able to do it, not when their boss needed it ASAP. Even writing this blog is not exactly comparable to writing a 10-page publication on space plasma physics.
And for people who retain a limited ability to work, finding a job with enough flexibility for a dynamic disability is almost impossible.
“Yeah, I can work, but only two hours per day. I cannot have meetings before 10 a.m., I cannot take spontaneous phone calls, and if I get a random bout of PEM, I won’t be able to work at all for at least three days.” Name me one employer who would not turn and run after hearing that.
But it is not just about online presence. Myalgic encephalomyelitis is so counterintuitive that even I, after living with it for almost five years, still sometimes do not understand it.
For example, I can swim. The buoyancy of water counteracts gravity, my great nemesis, and frees up capacity for movement. In fact, it is less strain on my body to swim 1 km than to walk 1 km. But I can only get to the pool if someone drives me, and only because the distance from the car park to the pool is short; otherwise, I would need a wheelchair just to reach the edge of the pool.
This makes complete sense to people who understand the physiology of orthostatic intolerance, but someone who only sees me swimming might think, “I knew she was faking. She’s swimming laps. How sick can she be?”
Another example: one day I had a doctor’s appointment in town. Usually, I walk because his office is only 150 m away. That day, I took my eBike because I was too unwell to walk. But according to a random person who saw me, I “must be better because I race through town on a bicycle.” What you see is not always what you think you see.
So, next time you see me outside watching birds on a random weekday, instead of thinking “Ha, got her. If she can watch birds, she can work!”, remember that I likely spent the previous two days on bed rest just to be able to leave the house. Be happy for me that I finally managed to do something fun. And ask yourself why you judge a person who is forced to spend 20 hours per day lying in a dark room, often in pain, and whose highlight of the week is 20 minutes of bird watching around her house.