There isn’t much I can say about other people who ask this question, because it can be asked in different ways; for different reasons. Sometimes it sounds almost sarcastic- someone might see you out for the first time in months looking perfectly all right and doubt that you’re sick at all. For others it could be genuine, though they would probably ask it in a way that’s a little less… Blunt.
What really interest me are the times where I ask myself this. I know how ill I am, surely I do?
Invisible illnesses are hard for people looking in to understand, but it’s hard for me too. If enough people tell you that graded exercise therapy (GET) will improve your condition or, even worse, that it’s all in your mind, how do you know what to believe? Evidence is very important here because you have to choose; both sides present very good arguments- saying what percentage of people made progress because of GET or sharing the stories of those sufferers who didn’t benefit- the ones who’s condition worsened because of it. It is all so confusing and that is disgraceful- when dealing with an unpredictable illness the last thing you need is more confusion. When this overload of information becomes too much there is only one type of evidence that matters; the type your body gives you. I’ve tried the unmanageable routines, getting up hours before the time my body would naturally choose, doing more in my lengthened day than I could take. I’ve been through it again and again only to end with the same result; weeks of getting up later, doing less than ever before. “After two weeks your body will get into a routine” was what they told me, “After two weeks my body gave up on me,” was my reality.
For you it could be different, who knows? The only way to find out is to try because, in the end, all the research really says is ‘everybody is different’ there are no definitive answers and certainly no miracle cures… Yet.
“How sick are you?”
“Sick enough that it has changed my whole life.”
That’s all you need to know.