These are some thoughts I shared elsewhere online after seeing a post about how people with severe ME die when they become homeless.
A lot of the time MECFS groups will tell you to quit your job. I get where they’re coming from but it’s not an accurate representation of reality. I can’t get disability type support (including payments). I don’t have family (I’m no contact).
I work because while it harms me and will cause a decline, it’s a slower decline than unemployment / homelessness would cause.
That’s the reality.
I can work a little. It’s really fucking hard to work even an easy, flexible, remote job. It comes at the cost of everything. Everything doesn’t just mean hobbies and enjoyment, it means eating well, taking care of myself. I can’t do both.
I’d like to take 6+ months off and rearrange my life in a more sustainable way, try to prevent burnout getting worse.
That would require massive financial support, which doesn’t exist. And yet pacing is what you’re supposed to do with this condition. The harsh reality is that pacing requires privilege, primarily support for tasks and support financially.
So I work and I do my best to slow my decline as much as possible.
That looks like: work + bed in the dark. As little as possible outside of that.
No support reduces quality of life.
