When I first got sick in early 2022, people sent me good wishes: “Get better soon.” Doctors told me: “Most people get better from Long Covid within a few months.” So, I planned to work a reduced schedule for a few months but expected to be back at full capacity by the autumn semester.
Because, in my mind, “better” equated to “almost fully recovered” or “able to work again.” I have since realized that that isn’t just me. I think most people interpret “better” as “almost fully functional again.” They also expect “better” to be permanent.
The reality with myalgic encephalomyelitis is a lot more complex and the word “better” without context is meaningless.
Myalgic encephalomyelitis is a fluctuating condition, a dynamic disability. People sometimes improve randomly but can deteriorate again just as fast. Some reach a state of quasi-remission, only to relapse months or even years later. And even those whose illness is largely stable have good days and bad days. So, I can be “better” (whatever that means) today, but worse again tomorrow.
Which is why context is important. “Better” can mean a person is able to tolerate a little bit of light again while still fully bedbound and entombed in their room. Or it can mean a person can go for short walks again a few times a week after having been housebound for months. Or it can mean a person can wash their hair every week instead of every month. All those things are huge improvements for the sick person but would hardly count for a healthy person who expects the sick person to “get better”.
“Better” can also mean an improvement in symptoms without a corresponding improvement in function. This distinction matters. While there are no causative treatments for myalgic encephalomyelitis, there are medications that can reduce pain, improve sleep, and improve orthostatic symptoms. Reduced symptoms can make someone feel better, which can greatly improve quality of life. But feeling better does not necessarily mean being able to do more.
For example: I have found a few medications that help with my symptoms of orthostatic intolerance. My heart rate upon standing is a bit better controlled, and I feel less symptomatic when I stand. But my upright time, i.e. the total amount of time per day I can spend sitting or standing, hasn’t changed. And this is what limits my ability to do things and leave the house. So, while I feel better subjectively, my objective physical capacity has not improved.
This distinction also has to be made when people want to know whether a specific drug “helps.” Helps with what? Symptoms? Physical capacity?
Which is why I try not to use the word “better”, anymore, or at least give specific context: “My sleep is better in that I don’t lie awake for hours every night anymore, but my capacity to do things during the day hasn’t changed.”
Or: “Today I am well enough to leave the house, which is why we ran into each other. But my condition hasn’t changed, and I will need to spend all day in bed tomorrow to recover from today.”