The Simon Heng column

When I first began to meet other service users, one thing that
struck me was that they seemed slightly more self-obsessed than
other people, except politicians and actors, of course.

Experience has taught me that there are two reasons for this. We
are used to explaining ourselves many times over, particularly to
gatekeepers of services and service providers: our peculiar needs
and individual preferences, our physical or psychological symptoms.
On a day-to-day basis, we have to communicate levels of detail that
would seem strange in everyday conversation.

For example, with a severe physical disability, I need to tell my
carers if I need to have a bowel movement. This is not normally
part of everyone else’s dialogue (except men’s). Friends of mine
with a learning difficulty often have to ask people to write down
appointments so that their helpers can ensure that they are in the
right place at the right time. Men excepted again, this isn’t usual
behaviour. Colleagues with a mental illness often feel that they
have to explain how their conditions limit what they can do, so
that people don’t think they’re just being rude when they refuse
invitations.

Sometimes, I get so used to talking about my physical needs and
difficulties that it becomes my main topic of conversation, and
that’s a difficult habit to break. And nobody takes the question
“How are you?” more seriously than I do, at times.

And so to the second reason for such self-involvement. When you
have a long-term condition, it’s easy, sometimes necessary to be in
a constant state of vigilance about one’s health. I know, for
example, to pay a lot of attention to pain, because this may lead
to pressure sores, which can have fatal consequences. People with
mental illnesses have reported that they often get warning signs
that their condition is about to get worse. If things play on our
minds so much, it is hardly surprising that we end up talking about
them as well.

Sometimes I think it’s surprising that we ever forget ourselves
enough to have fun…