The most terrifying compliment you can pay someone with a hidden illness

In news which will surprise nobody, I suffer from CFS/ME. It's a difficult condition to manage, not only because of its effects but also because of the way people react to it – or, more specifically, don't react to it.

CFS/ME, fibromyalgia, and similar conditions present – to the uninformed eye – as a person being antisocial and lazy. One of the top worries for a sufferer who is able to hold down a job is how our colleagues and superiors feel about us. Even when a job isn't involved, we have the same worries about our friends.

So when we hear this particular compliment (or a variant) it completely paralyses us with worry. That compliment?

"You're looking really well"

Suddenly, the efforts that we've made to tell people about our conditions, while trying to come across as self-motivated, mature, and responsible, seem like they're nothing.

Others see us as well people, because we're looking really well.

Does this mean that everyone's judging us on the basis of what a well person should be capable of? Do the cornucopia of fuckups that our conditions bring seem like they're wilful? And, critically, do the vast majority of people – who, necessarily, we haven't made the enormous effort to try to explain our conditions to – think that we should be doing better?

It's a statement that comes from the best of places, and especially from people who do understand the condition. It's meant to make us feel better, to make us feel less of a failure. It does the opposite.

What would we rather hear? "Wow, you look like crap" is actually better. The ideal, though, is nothing. Not commenting on my outward appearance of health is an implicit statement that you understand that appearances are completely meaningless.

If you want to talk about how we're doing, ask us. Understand that a hidden illness is called that for a reason, and that your support is not only appreciated but critically important.