Thread by @bennessb

I’ve seen so many newly sick people who are worried that the general public isn’t taking chronic post-viral illness seriously because of the language we use to describe it.

I just really want to assure people that language isn’t the problem. willful disbelief is the problem.

if you talk about fatigue, some people will say “we all get tired sometimes.”

if you talk about literally losing consciousness after trying to sit up, some people will say “don’t be so dramatic.”

we’re not describing it wrong, they just don’t want to hear about it.

(also to be clear, I’m not saying that the language we use doesn’t matter. I’m generally pretty committed to building better language so we can talk about our experiences *with each other *.

other people have already decided whether or not to believe us before we start talking.)

here are some reasons people have trouble accepting how severe [fatigue] can be:

- their job depends on not believing fatigue is disabling

- their capacity to push through their own undiagnosed fatigue depends on not believing fatigue is disabling

- ableism is everywhere

someone who believes you will ask clarifying questions if they don’t understand. someone who doesn’t believe you will ask minimizing questions or reply w minimizing statements.

arguing w the latter can be a huge waste of energy & also often survival depends on these folks. so.

(also, unfortunately trauma and also cognitive dysfunction can make it really difficult to discern between clarifying & minimizing, which just fucking sucks and makes all this bs harder.)

someone in the replies said I’m overestimating how many people are out there trying to understand our experiences in good faith and I just want to be very very clear that this thread is about how MOST people are primed NOT to believe us regardless of the language we use.