Thanks, Ted. I agree that ignorance and unhelpful advice aren’t always rooted in mistrust. I’ve framed it around words like “trust,” “believe,” and “understanding” because I see them as proxies for empathy, or barriers to engaging empathy. Another way of framing it could be acceptance: accepting what the person tells you as their experience. But for me, acceptance is still tied to trust and empathy.

Grief is another area where people often struggle to offer meaningful support. I agree with you there. I’d hope that truly empathetic people are open to learning how to be better over time, even when they don’t get it right at first. And recognise that actually we all don't say the right thing all the time.

With illnesses like mine, though, I do think “believing” or “trusting” what we say is a real barrier. Many people genuinely can’t imagine the symptoms. Conversations with well people can be funny:

“Are you in pain right now?”

“Yes.”

“Do you still feel sick right now?”

“Yes.”

And they’re stunned by how constant it is. I can see the disbelief in their reactions. Some openly admit they didn’t think it was “that bad” until I explained further—and that’s the kind of mentality I’m addressing.

This issue becomes even more frustrating in workplaces that promote themselves as champions of diversity and inclusion, but simple accommodations, like an adjustable chair, take months to happen.