I was very moved by this, as by other posts here and the article itself. I totally relate to what you say about the awkward 'what do you do?' question. I was on sick benefits for a while but am now self-employed and receive benefits as a low paid self-employed person. Is there anything you could do to earn a bit of money here and there, such as crafts or online work? Even if you only do a few hours here and there, it's a different answer to the awkward question and provides a new topic of conversation, as well as feeling quite rewarding.

I had a similar situation as a child/teen when discussing my parents. My dad was disabled and cared for by my mum. But my dad edited a magazine for disabled people and my mum wrote journal articles, so I tended to focus on that. I think voluntary work counts as a valid answer to the question.

It's unacceptable and sad that anyone sees disabled people as undeserving of benefits and unfortunate when invisible disability leads people to assume someone is not genuine. But it's also the case that discussing jobs is seen as a not very personal thing to do with someone you've just met, whereas discussing disability can get quite personal. I guess at least you're managing to do hobbies which can be another of those useful conversation starters (and usually more interesting than discussing jobs anyway!)

Sending you all my best wishes